November 15, 2014Uncategorized

Nada Chaiyajit

Published Online: November 15, 2014
Full Text: HTML, PDF

Abstract

Currently, access to sexual health information that serves the needs of transgender individuals is non-existent or severely limited.  With “Getting to Zero” as the official UNAIDS campaign to achieve zero new HIV infections, zero discrimination and zero AIDS-related deaths, this lack of access to information coupled with immense stigma and discrimination among transgender individuals will not allow UNAIDS nor the world to achieve such impressive goals.  This paper identifies gaps and challenges in HIV services for transgender individuals living in Thailand.  Among other recommendations, the paper recognises the need for the ‘de-coupling’ of transgender services from those serving men who have sex with men.  The paper describes an innovative communication technology project, the Thailadyboyz (TLBz) Sexperts! Program, a low-cost, transgender-led, community project offering accurate online transgender-specific sexual health information, social support and legal advice.  The paper describes how the TLBz Sexperts! Program exemplifies the power of online communities and social networking platforms in reaching transgender individuals, especially when transgender community members lead in the design, development and implementation of such resources.

Keywords: Transgender, HIV and AIDS, Getting to Zero, UNAIDS, Sexual Health Information, Thailand

Introduction

Throughout the world, there is a lack of transgender-specific sexual health information, even on the Internet where one would expect to find a lot of this information. Even more glaring, access to online transgender-specific sexual health information in native languages is particularly limited. In Thailand, a country recognised as a world-renowned medical hub for sex reassignment surgery (SRS), such information is almost non-existent (Aizura, 2010).

To date, most online resources dedicated to transgender individuals’ health and wellbeing are based in high income countries.  Examples of extemporary resources are the web site of the Center of Excellence for Transgender Health at the University of California, San Francisco; the Gender Health Resource Guide developed by The American Congress of Obstetricians and Gynaecologists; Transgender Women – Transgender Health Matters by the Terrence Higgins Trust in the UK; the Gender Centre Inc.’s online platform, which is supported by the New South Wales Department of Human Services in Australia; and TransHealth, a U.S.-based comprehensive web-based clearinghouse that has a list of organisations that provide information and resources on a variety of topics related to transgender health. All of these resources are English-language websites. Transh4ck, developed by Dr. Kortney Ziegler, is an innovative open source web-based approach to tackling the socio-economic obstacles experienced by the transgender community, including unemployment, relatively lower salaries, homelessness, and discrimination across multiple social services, including access to adequate healthcare services. Not only is the establishment of these online resources providing transgender individuals in these high income countries and other English-proficient individuals with easily accessible vital and potentially life-saving sexual health information, they also serve as a web-based platform designed to help bring the transgender and gay/MSM communities closer to achieving the UNAIDS goal of “getting to zero”, which calls for zero new HIV infections, zero AIDS-related deaths, and zero HIV-related discrimination worldwide.

Unfortunately, to date, Thailand remains on the sidelines in the promotion and implementation of technologically innovative sexual health resources for transgender people. This paper aims to highlight the stigma and discrimination faced by the transgender community in Thailand, efforts implemented by Thai-based transgender-focused community organisations to address these and other barriers to accessing healthcare, and recommendations to help Thailand not only be recognised as a medical hub for sex reassignment surgery, but also as an leader in ensuring access to quality transgender health information and championing the social, economic, and health rights of all transgender individuals.

Background

Currently there is only one location in Thailand (Pattaya) that provides comprehensive, transgender-led services for transgender people.  The services are unique in that they are tailored to meet the actual HIV prevention and care service needs of the transgender community. Sisters, an transgender led and staffed organisation, is able to accomplish their efforts by working closely with key public health officials in Pattaya and by actively promoting healthy sexual behaviours among transgender persons.  As for the rest of country, Thai community-based organisations (CBOs) have been tasked with conceptualising and implementing virtual or web-based general health support services for the transgender population.  Rainbow Sky Associate of Thailand (RSAT) in Bangkok, Mplus Foundation (Mplus) in Chiang Mai, Health and Opportunity Network (HON) in Pattaya, and Andaman Power in Phuket are four prominent CBOs that have taken on the challenge of addressing the online sexual health information needs of the transgender community.

Despite efforts made by CBOs in Thailand to offer information to transgender individuals via a stigma-free, non-discriminatory, and easily accessible online platform, most sexual health initiatives targeting the transgender community are a sub-component of programming intended to address sexual health and HIV needs of men who have sex with men (MSM). For example, The Silom Community Clinics in Bangkok and Chiang Mai offer general sexual health services to both the MSM and the transgender community. RSAT, Mplus, and Service Workers IN Group (SWING)–which provides services to sex workers in Bangkok, Pattaya, and Koh Samui–also strive to provide appropriate services to the transgender population.  The fact is the sexual health knowledge and HIV prevention needs and wants of a transgender individual differ vastly from the needs of MSM. Transgender women and men require a safe transgender-specific space to discuss the sexual practices and behaviors that are specific to their individual anatomies, and a safe place to discuss the fear and struggles that accompany preparation for, and the experiences following, sex reassignment surgery. Currently, the resources available at CBOs and clinics to offer this vital public health service to the transgender population are severely limited.

The term MSM has been employed to describe a broad range of individuals where male-to-male sex is not framed so much in terms of homosexuality versus heterosexuality, or gay versus straight, but along a spectrum of masculinities and gender variance that incorporate ideas of feminisation, gender orientation, penetrative masculinity, desire, and sexual orientation. Although the majority of male to female (MTF) transgender persons who have undergone sex reassignment surgery identify as women, they are still referred to as MSM by key public health professionals and organisations. This unequivocally exhibits a lack of sensitivity and respect towards an individual’s self-defined sex and gender identity (Walsh et al.).

Ami B. Kaplan, an accomplished psychotherapist and committee member of World Professional Association of Transgender Health (WPATH) explains that the difference between gay men, MSM, and transgender individuals is contingent on the narrow definition of one’s sexual orientation (who you are attracted to sexually) and one’s gender identity (who you know yourself to be). While transgender individuals are now often lumped in the same category as gay men under the lesbian, gay, bisexual, and transgender (LGBT) umbrella, there are specific differences between the groups that are vital to the identity and experience of the members of each group. Historically, transgender individuals have had to jump through many hoops in order to transition to their desired sex and gender. LGB individuals go through the process of “coming out”, but this does not require anatomical alteration. Transgender individuals also “come out”; however, the process is more complex. For example, many transgender individuals are required to address issues around body dysphoria as well as social acceptance. The transgender individual also employs more invasive medical processes such as hormone replacement therapy, voice alteration, facial hair removal, and other alterations (Kaplan, 2009).

In Thailand, male to female transgender individuals are legally identified as male.  Transgender people in Thailand cannot legally change their gender on their identification cards. This often results in difficulties in securing employment. Transgender individuals in Thailand report that potential employers have denied them employment due to misperceived complications with hiring transgender people. A “Thai phuying praphet song” (‘woman of a second kind’) carries a male ID card, and travels with a male passport, which she must use when she opens a bank account, applies for a job, and any number of other everyday activities (Winter, 2008). Current Thai law maintains that only the transgender person’s sex at birth can be reflected on the individuals’ passport. This practice creates confusion, forces the transgender person to “come out” in situations where he or she may not want to, and creates unnecessary scrutiny at border crossings and immigration checkpoints. Thailand also prohibits same sex marriage, meaning that when the partner of a heterosexual transgender person dies, the deceased’s family receives any and all assets, and the transgender individual is entitled to no inheritance (Armbrecht, 2008). As a result transgender individuals’ career opportunities are fettered by the discrimination they experience, often forcing them to accept stereotypical jobs such as waitress, hairdresser, make-up artist, and street vendor. This is true even if the transgender individual holds an advanced academic degree.   The alternative is often sex work.

Social, economic, and psychological discrimination experienced by the transgender community, as described above, places them at high risk for gender-based violence (GBV), HIV, and other sexually transmitted infections (STIs). Because transgender people are marginalised in Thai society, national healthcare providers and human rights groups have been slow to address acts of GBV against members of the transgender community. GBV is frequent in the transgender community and often results in devastating consequences for the victims, including physical, sexual, and mental harm and suffering (Thepsai & Walsh, 2008). This overt, and often unchallenged, abuse is not seen as a crime, but as a private family matter, leaving its victims feeling intimidated and fearful.

In an effort to address GBV experienced by the transgender community, the Health Policy Initiative, funded by the United States Agency for International Development (USAID), engaged CBOs and other health sector entities in a project aimed at screening transgender individuals for GBV in Pattaya, Thailand. The 2008 study found that 89% of transgender individuals surveyed had experienced some form of GBV (USAID, 2009). This degree of GBV combined with the transgender population fearfulness of reporting crimes to the police, their inadequate access to healthcare and HIV testing, and the economic pressures they face to simply survive in Thailand place this population at high risk, not only for repeat GBV, but also for HIV infection and the transmission of other STIs.

Effective Programming

Given the absence of opportunities and platforms to access information regarding the needs of the transgender community, transgender activists in Thailand established Thailadyboyz (TLBz.) in 2002. TLBz[1] is a 100% virtual community aiming to provide transgender individuals with an on-line community and a second home, where they can  safely communicate with each other about issues that specifically concern them. The online community is warmly referred to by members as the “Blue House” due to the website’s colour. Virtual services offered by TLBz include chat rooms for specific topics. The “Blue Sofa” chat room serves as a guest room for members who want to address general topics and welcome new members. The “Beauty Ladyboyz” chat room gives members the opportunity to share beauty secrets. The “Red Chair” chat room is a space where individuals can listen to and view audio-visual stories that are collected by the site administrator and site members. The “Beauty by Surgery” and “Taking Hormones” are the most popular chat rooms where people exchange information about their own experiences with hormone use and sex reassignment.

In 2011, amfAR supported the development and implementation of The TLBz Sexperts!, an online HIV/AIDS, human and legal rights counselling service run by transgender individuals for transgender individuals. The program continued under the oversight of Bridges Across Borders Southeast Asia Community Legal Education Initiative once funding for the program from amfAR ceased. The TLBz Sexperts! program was offered three hours a day, five days a week (Figure 1). The current adaptation of the program focuses on providing counselling services to male to female (MTF) transgender individuals across Thailand.

The implementation of The TLBz Sexperts! program did not come without its challenges. During the first month of services, only seven visitors utilised the services. However, TLBz Sexperts! have now provided counselling services to more than 1,300 transgender members through closed trans-groups on Facebook. TLBz Sexperts! offers online counselling via trained transgender counsellors.  The impact of social media and online networking influenced the way The TLBz Sexperts! program operated. The administrators realised that the majority of the transgender community were virtually connected, primarily via Facebook, so they adapted and began offering online counselling services exclusively through Facebook. The two Facebook groups created by TLBz Sexperts! are “Sao Praphet Song of Thailand” and “TLBz Sexperts!”.

TLBz Sexperts! aims to foster a safe, online community for the transgender community by employing the evidence-based popular opinion leader (POL) approach.

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Figure 1: TLBz Sexperts! Facebook website

By having strong, knowledgeable, and empathetic transgender leaders as readily available online counselors, TLBz Sexperts! offers members a unique opportunity to engage with individuals who understand them and are eager to share their experience. The POL’s primary responsibility is to ensure that members feel free to ask whatever questions they may have regarding their sex, gender, sexuality, sexual behaviours, and their basic human rights.

To gauge the effectiveness of offering TLBz Sexperts! services exclusively via Facebook, members were directly asked to comment on their experience. Most members stated that they felt no gap between themselves and the counsellors, even though the information disseminated by the counsellors is done virtually. Members stated that TLBz Sexperts! were instrumental in providing vital individual counselling services around issues commonly experienced by the transgender community and were effective in referring individuals to a healthcare provider to address an individual’s more clinical needs, such as screening for HIV/STIs. Below are a few comments shared by members regarding TLBz Sexperts!:

  • “I never thought that HIV would become a serious issue in my life before until I found out my HIV-positive status during an annual health check-up.  During that moment, I knew nothing about HIV/AIDS, and no one from the hospital provided me with adequate pre or post-test counselling services. I was completely lost. A friend of mine introduced me to TLBz Sexperts!, and I reached out, asking for more information about HIV/AIDS and a referral to a medical provider. TLBz Sexpert connected me to Silom Community Clinic, where I connected with other people living with HIV/AIDS like myself. I was linked to medical care, informed that the cost of my care would be covered by the social security healthcare plan in Thailand and placed on lifesaving HIV antiretroviral therapy.” – Malisa (TLBz Sexperts! member)
  • “Transgender people tend to want to communicate about their health needs with someone they know they can trust. TLBz Sexpert! is great in that I know I can communicate with a trusted leader and receive services anonymously. The fact that the TLBz Sexperts! staff remains connected to the community ensures the appropriate and timely dissemination of information. There is a need for the TLBz Sexperts! counsellors who are well versed in issues about the body and mind; individuals who are always sincere and honest in their approach. – Bombay (TLBz Sexperts! transman client)

In 2012, the TLBz Sexperts! program began recognising it was a “big thing that had a small beginning.” The TLBz Sexperts! staff pride themselves on this statement, because they aim to provide the best services available, even in an environment of no resources. An article describing the work of TLBz Sexperts! has been published under the title “Sexperts! Disrupting Injustice with Digital Community-led HIV Prevention and Legal Rights Education in Thailand” with Digital Culture & Education (DCE) and The HIVe (Chaiyajit and Walsh, 2012). Nada Chaiyajit, a TLBz Sexpert and program leader, was invited to record the podcast “Reaching the Transgender and MSM population through Social Media” by AIDStar-One, on behalf of USAID and the United States President’s Emergency Plan for AIDS Relief (PEPFAR). TLBz Sexperts! was also named an effective model for the transgender community by Avert in an article entitled “Transgender and HIV”.

TLBz Sexperts! is committed to the idea of “Sexpertise”. “Sexpertise” promotes transgender-grown initiatives that are specific to their community and that assist transgender individuals in better addressing the barriers that exist with being transgender, including anxiety brought on by social pressure to be and act a certain way and not being able to access or enjoy certain basic human rights, such as the right to one’s own identity—a right that transgender people are often legally denied in Thailand.

Recommendations

TLBz Sexperts! is actively engaging the transgender community by providing 100% pro-bono work within a volunteer system, which is one example of a resourceful approach to engaging the transgender community online; however, there is a need for funds for capacity building TLBz Sexperts! would be a more effective online peer outreach and prevention platform if all counselors possessed the skill set to seamlessly deliver information, not only about the HIV prevention and care needs of members, but also to speak knowledgeably about issues of self-esteem, body image, sexual pleasures and gender rights.  Several approaches that key funders can take to address the issues of HIV infection, AIDS-related deaths, and stigma and discrimination faced by the transgender community in Thailand  were developed by TLBz Sexperts! specifically for the transgender community in Thailand to expand the work that has been to date:

Best Sexual Life in Practice Workshop: This is a learner-centered workshop conducted in safe and friendly spaces that aim to invite pre- and post-operation transgender individuals and individuals who have no intention of surgery. The goal of this initiative is to bring together a diverse group of transgender individuals to share their sexual experiences and discuss best sexual practices in a safe environment. Brainstorming sessions would be conducted to address issues Thai transgender persons experience in accessing sexual health and information about HIV prevention and care, as well as institutional and non-institutional barriers to sexual health and transgender health. Participants would also discuss how Thai transgender persons embody transgenderism or transgress heteronormative gender norms to better understand what these mean and to design customised, holistic sexual-health resources that are specific to Thailand and are specifically aimed at building and strengthening Thai transgender people’s self-esteem. An emphasis would be placed on discussing concerns around HIV and AIDS, STIs, and voluntary confidential counseling and testing services to identify obstacles and myths that influence Thai transgender person’s sexual practices. This would allow researchers to better understand not only the biological pathways of HIV infection, but also the psycho-sexual and social determinants specific for the transgender community in Thailand. The design, implementation and evaluation of this initiative should be guided by an elected steering committee of Thai transgender individuals.  This would bring the virtual online community efforts to a physical environment with peer educators for skills building.

Continue and Expand Design of Online Resources through Sexperts! Brand & Website: The aim of this activity is to use data collected on specific transgender health issues via the current website to develop holistic information regarding sexual education, sexual practices, and other health resources. This new and improved online platform would address misunderstandings that arise from stigma and discrimination; address short-term and long-term complications from body augmentations, surgical procedures, or hormone and silicone use; assist Thai transgender people in better understanding their personal risk for HIV (in relation to pre/post/no intention operation); help Thai transgender people engage in safer-sex negotiations; and provide referrals to transgender-friendly sexual healthcare providers who are known to other transgender people to be adequately aware of transgender anatomy and issues (e.g., neo-vagina & STIs; ) to meet Thai transgender person’s diverse sexual health needs. It would also provide referrals to transgender friendly legal services.

Develop Transgender Holistic Sexual Pleasure, HIV Prevention and Care and Legal Rights Online Resources Center: The aim of this activity is to create capacity to post “Sexpertise” content online, including articles and links to informative videos that could be easily accessed by all registered online members.

Designa Video Series, Transgender Mama Talk: The aim of this activity is to employ nominated Thai Transgender Champions, who can also be POL, to produce a web TV episode series conceptualised, written by, and starring Thai transgender individuals titled, Mama Talk: Living a Happy, Healthy, and Sexually Pleasurable Transgender Life in Thailand. This online series would cover topics such as transgender health, transgender sexual pleasure, transgender HIV prevention, how to negotiate safe sex, accessing transgender sexual health, top transgender beauty tips, hormone use, sexual reassignment surgery, transgender legal rights in Thailand, and dealing with stigma and discrimination.

Conclusion

Everyone has a fundamental human right to enjoy the highest attainable standard of physical and mental health. Yet, it is evident that the key international organisations responsible for crafting and promoting health policy to help ensure everyone has access to this right need to do more to better highlight and promote the specific sexual health needs required by the international transgender community, so transgender individuals can lead the safest, most productive lives possible. ).

In order to truly get to zero HIV infections, zero AIDS-related deaths, and zero discrimination, international and national organisations must invest in transgender-specific research, interventions, and advocacy needs. Research topics should include the effects of ART on hormone use and sexual reassignment surgery and the sexual risks for individuals with neo-vaginas; finding more epidemiological and behavioral data on transgender populations (including transmen); and linkages between human rights violations and increased HIV vulnerabilities specific to the transgender community. More information is needed around HIV treatment and other essential health issues affecting the health and well-being of the transgender community.

A successful, web-based transgender community was developed for providing healthcare information and sharing experiences through online communities in web boards and other types of social networking in online support groups. The experiences from this collective were compiled into TLBz Sexperts! and reached out to 1,300 transwomen. Unfortunately, TLBz Sexperts program suffers from funding limitations and lack of staffing of experts on the issues concerning transwomen’s health. Recommendations for further development of the program are contingent on funding.

An expanded online platform where transgender individuals can safely exchange information with members and benefit from the counseling of comprehensively trained online popular opinion leaders is a necessary weapon in the fight to stem HIV and AIDS and decrease stigma and discrimination towards transgender persons in Thailand. Key international organisations like UNAIDS are in a unique and powerful position to promote and advocate for these initiatives as well as engage local community-based organisations, national governments, donors, and research institutions, and to encourage public-private partnerships to tackle the socio-economic and psychological struggles that unequivocally make transgender individuals a key population at high risk for HIV infection.

Acknowledgements

I would like to thank Kent Klindera, Elena Kelly, Cameron Wolf and Dr Christopher S Walsh for their support in assisting her in publishing this manuscript.

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AIDSTAR-One (2012). Improving HIV testing and counseling. Retrieved from: http://www.aidstarone.com/focus_areas/hiv_testing_and_counseling/resources/case_study_series/sisters_thailand

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Biographical Statement

Nada Chaiyajit is transgender Sexperts! Consultant at Health and Opportunity Network (HON) and the project manager for TLBz Sexperts! Online Peer Outreach and Prevention program, where she is working to improve education and empowerment among transgender communities in Thailand.  She has worked as a transgender advocate since 2006 and has been with BABSEA CLE since 2009, during which time she has been a guest speaker at the 17th, 18th and 20th International AIDS Conferences.  She is also the Audience Council Secretary for LGBT and transgender rights for the Thai Public Broadcasting Service (Thai PBS).

Nada is a founding member of the ‘Thai Transgender Alliance’, a fellowship network that promotes understanding and equality for transgender people in Thai society. The Thai Transgender Alliance is using the Internet to compile a database of human and sexual rights violations against transgender people to prove to the authorities that this gender-based violence (GBV) is a violation of their human rights and a major public health issue.

Nada has lobbied individually and collectively to modernise the Thai criminal law on rape, advocating for a specific equality provision for both men and women. Drawing on funded research and her experiences as advocate for human rights, Nada has worked collaboratively with marginalised and stigmatised populations in initiatives to promote democracy, social justice and equity by strengthening their capabilities and promoting their involvement in online communities of practice.

Nada was the keynote speaker at the 2010 IADIS International Conference on E-democracy, equity and justice, and also presented her work at the AIDS 2010 Conference in Vienna. Her work also has included media advocacy and education pieces with productions.

Email: nada.chaiyajit@gmail.com


Diane Maria Zambrano Rodríguez

Published Online: November 15, 2014

Full Text: HTML, PDF

Abstract

In this article, I describe Asociación Silueta X and highlight three of it current virtual campaigns: BESOS LGBTI (Kisses LGBTI), Tiempo de Iqualdad (Time for Equality), and Campana Mi Genero en Mi Cedula (My Gender Identity in my ID Card). I specifically outline how Asociación Silueta X uses information, communication technologies ICTs to support advocacy for the lesbian, gay, bisexual, transgender, and intersex (LGBTI) communities in Ecuador. I also outline and describe how Asociación Silueta X engaged in research and advocacy to lobby the Ecuadorian Government to establish the country’s first LGBTI counseling and medical center in Guayaquil, Ecuador. This medical center was created not only to meet the needs of LGBTI individuals, but also to improve access to healthcare among Ecuadorian transgender individuals specifically, due to data showing that this population has particularly low levels of access to services.

Keywords: Transgender, LGBTI, Ecuador, social inclusion, transgender friendly medical center

Asociación Silueta X

I established Asociación Silueta X when I was 28 years old. It is a grassroots organisation that was created on May 12, 2008 and legally established on May 5, 2010 by Presidential Decree MIES # 9989 of Ecuador. It is a nonprofit association whose mission is to fight for lesbian, gay bisexual, transgender, and intersex (LGBTI) rights in Ecuador.  Asociación Silueta X specifically works to create accessible living conditions for LGBTI individuals with an emphasis on the transgender and intersex population. These conditions encompass health, education, employment, and social justice programs for sexual diversity.  After nearly four years of working for the LGBTI people of Ecuador, Asociación Silueta X has transformed from a small grassroots organisation reaching people through face-to-face interactions into a highly visible grassroots association with a virtual presence that has helped the LGBTI population experience unprecedented visibility and access to information important to its diverse communities. This critical step not only highlights Silueta X’s innovative methodological process to successfully execute our advocacy plans, projects, and campaigns and celebrate the impact achieved nationwide, but also reflects Silueta X’s innovative and successful use of information communication technologies (ICTs). Asociación Silueta X runs numerous campaigns that focuses on holistic health and sexual and reproductive rights for LGBTI individuals, including:

  • Capacitaciones a Voluntarios (Training Volunteers)
  • Capacitaciones a Instituciones Públicas  (Training for Public Institutions)
  • Salud Integral  (Integral Health)
  • Juventud GLBTI (LGBTI Youth)
  • Incidencia Política  (Political Advocacy)
  • Arte y Cultura  (Arts and Culture)
  • Derechos Humanos (Human Rights)
  • Comunicaciones (Communications)

Importantly, as an LGBTI organisation, we are able to use ICTs to communicate widely and effectively with all of our members across Ecuador.

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Figure 1: Facebook of Asociación Silueta X

From its founding until the present day, Silueta X has experienced a dramatic increase in coverage by the mass media coverage, which now covers more of its activities than those of  LGBTI organisations in Ecuador that were founded earlier. Silueta X leverages the power of social media via social networking sites and apps, especially Facebook (with more the 5,800 members), using it to provide  updates about its organisational and advocacy activities (Figure 1). Asociación Silueta X clearly understands the powerful role of social media and has created multiple  sites that cover specific activities.  In part, Silueta X measures its impact by the tremendous amount of mass media coverage that grows out of social media strategies.

To date, ICTs have allowed Silueta X (Figure 2) to reach a diverse population of LGBTI individuals, especially those who are targeted through distinct approaches, such as the trans or intersex populations. The use of technology has not only brought the trans and intersex populations closer to organisational activities, but has also allowed the organisation to save time.  Previously, as a grassroots organisation, we working primarily thorough field work, which of course is still carried out, but has been made easier thanks to ICTs.

Technology has also been involved in legal matters, such as the recognition of name changes on ID cards (Campana Mi Genero en Mi Cedula/My Gender Identity in My ID Card), collecting data for trans-focused studies, and addressing proposed laws that include sexual diversity. Primarily though using ICTs, Silueta X has created paradigm shifts regarding the safety of trans sex workers; has engaged and trained national police officers (Capacitaciones a Instituciones Públicas/Training for Public Institutions); and has created several promotional and preventative programs with emphasis on the trans population regarding STDs and HIV using videos on YouTube as part of the Tiempo de Iqualdad (Time for Equality) campaign, among other activities.

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Figure 2. Silueta X’s website

We also have the three virtual campaigns we are very proud of:

  • BESOS LGBTI (Kisses LGBTI);
  • Tiempo de Iqualdad (Time for Equality); and
  • Campana Mi Genero en Mi Cedula (My Gender Identity in My ID Card)

BESOS LGBTI (Kisses LGBTI)

Beso Gay Les Bi Trans is Asociación Silueta X’s campaign that confronts homophobia.  It uses Facebook and YouTube videos.  It promotes a public kiss between the participating LGBTI partners. Besos LGBTI has had three massive public “kiss ins” in Guayaquil,  Ecuador that have been replicated across Latin America.

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Figure 3. Asociación Silueta X’s BESOS LGBTI campaign

Tiempo de Iqualdad (Time for Equality)

Asociación Silueta X’s campaign Tiempo de Iqualdad (Time for Equality) is focused on the structural and paradigmatic changes for LGBTI populations that resulted from the conservative and fundamentalist mentality in Ecuador that often denies LGBTI individuals their human and sexual rights. The campaign has five poignant videos that address the following topics:

  1. Centros de Tortura/Torture Centers
  2. Acceso a Salud/Access to Health
  3. Acceso a Empleo/Access to Employment
  4. Acoso/Bullying
  5. Educación Laica/Secular Education

Silueta X is using these videos, which are posted on YouTube,  to promote structural changes through advocacy and agreements with various state institutions. By collaborating with a number of LGBTI organisations, the films explore various topics from issues of sexuality to fighting for justice and rights. This national campaign would not have been possible without the support of Silueta X’s sponsors, including Mama Cash, amfAR, and Hivos.

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Figure 4.  Tiempo de Iqualdad’s  (Time for Equality) video, ‘Discriminación a transexuales en centros de Salud’ (Discrimination of transsexuals in medical centers)

Campana Mi Genero en Mi Cedula (My Gender Identity in My ID Card)

On June 6, 2012, the Ecuadorian Confederation of Trans and Intersex Communities (CONFETRANS), which is part of Asociación Silueta X’s Transgender Project “Building Equality,” presented a draft amendment to the Civil Registration Act of Ecuador that would remove the gender/sex on the Ecuadorian citizenship identity card. The campaign My Gender Identity in My ID Card  accompanied the amendment and was presented to the Rule Governments and Decentralization Commission of the National Assembly of Ecuador on July 23, 2012.  The campaign includes a YouTube video (Figure 5.).

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Figure 5.  Asociación Silueta X’s Campana Mi Genero en Mi Cedula (My Gender Identity in My ID Card) YouTube video

Background

Social inclusion for lesbian, gay, bisexual, transgender, and intersex (LGBTI) persons regarding public health policies in Ecuador is still challenged, despite the fact that sexual orientation and gender identity are included in the constitution of the Republic of Ecuador (Constitution of the Republic of Ecuador, 2008).  In fact, this recognition of gender identity and/or expression is one the first trans-inclusive constitutional provisions in the world (Martínez Dalmau, 2008).  However, the enforcement of and/or adherence to this ‘said’ recognition is complex in a conservative and exclusionary culture, such as the one in Ecuador.

In addition, in 2012 Ecuador’s Secretary of Health, Carina Vance Mafla, was the first openly lesbian secretary to be appointed in Ecuador (Garcia, 2012).  The inclusion of a lesbian Secretary would make most people believe that Ecuador is progressing on social acceptance of LGBTI human rights, even with regards to gender identity in the public or government sphere.  Nevertheless, accessing the right to gender identity or expression in public services is still complicated.  To address this glaring issue, as part of its social responsibility, Asociación Silueta X has requested countless dialogues with the authorities in order to be able to come to an adequate agreement.

Using ICTs to support advocacy

Depathologization of Transsexuality

Starting in 2012, Silueta X successfully engaged in dialogue with academia and the Department of Health to incentivise those who would appear before the WHO to advocate for the Depathologization of trans sexuality in a forum entitled “Psychology and the Department of Health on the Depathologization of Transsexuality.” This advocacy resulted in success. Gabriela Rivadeneira from the Department of Health’s Division of Standardization and Silueta X drafted a statement and appeared at a hearing on the subject.  All of the planning and community mobilisation activities for this event were done through contact via ICTs, including Silueta X’s website, Facebook, and Twitter. This allowed Silueta X to elicit constant feedback from members that was used to develop the document that was presented to the Department of Health.  With this statement Secretary Rivadeneira was prepared to appear before the WHO in

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Figure 6. Silueta X’s social networking mobilisation activities for the Depathologization of Transsexuality

December and advocate for the depathologization of transsexuality publicly in March of 2013. An official Letter was sent to the WHO from the Department of Health on the depathologization of transsexuality thanks to Silueta X’s work engaging in dialogue with the Department of Health. This is not only important because of Silueta X’s commitment, but also because Silueta X’s activities successfully influenced the political sphere to support the transsexual population, in this case by advocating for depathologization. Moreover, it is vitally important to emphasise that the organisation’s success lies in the use of information technology to mobilise LGBTI individuals and the general public.

Silueta X lobbying to establish the first trans friendly medical office

Asociación Silueta X has also sought to work more effectively with the Secretary of Health and educate the entire ministry about transsexuals and hormone therapy. This led to Asociación Silueta X successfully hosting a formal meeting to inform the Secretary about  the difficulties that transsexual and intersex populations face regarding gender identity. Silueta X also asked for support to establish the first LGBTI counseling and medical center in Ecuador.  After the meeting, the Department of Health verbally agreed to take on this task. Division 7 from the Department of Health was present to support the the LGBTI medical center, along with state authorities such as the Secretary’s Advisor Patricio Aguirre and representatives from multilateral organisations such as UNAIDS, among other high ranking key players (Salazar, 2013).

This medical center was specifically created due to statistical data recognising the low level of access to healthcare services among Ecuadorian trans individuals (Figure 7). A bio-behavioral survey of the HIV epidemic carried out in 2012 by the Department of Health of Ecuador shows that the trans population has an HIV incidence of 31.9%, followed by 11% among men who have sex with men (MSM) (Pan American Health Organization, 2012).  These results truly show that the trans population is the most exposed to HIV.  To compliment this study, Silueta X conducted another study in 2012 (in partnership with the University of Guayaquil and financially supported by amfAR) that indicated that 55% of female trans have been discriminated against while seeking public healthcare services (Asociación Silutea X, 2012). Close to one hundred surveys from this study were collected online through Facebook.

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Figure 7. The inauguration of the first LGBTI health center (El Telegrafo, 2014)

Silueta X also used its online community to help recruit clients for a study called “Report on LGBTI Access to Justice and Human Rights 2010 to 2013.” In the study, Silueta X gathered concrete data proving that the trans population is exposed to violence on multiple levels. For example, data indicated of 20 murders where victims were from the LGBTI community, two were gay men, three lesbian women, and 15 trans individuals (Asociación Silueta X, 2013). The report also made recommendations for Ecuadorian public policies paying greater attention to the needs and rights of trans individuals, including a call for research to estimate the size of the trans population, a call for gender- affirming healthcare, and a call for programsaddressing simple quality of life issues that are free from stigma and discrimination based on gender identity and expression.  The key goal of the study was to obtain a realistic picture of the lived realities of trans individuals and inform policies to match those needs, thus having greater impact on the health and rights of this population.

This study added to data from a study conducted by the National Institute of Statistics and Censuses, which used a sample of almost 1000 trans individuals. This study also showed major deficits in social services—58% of trans participants did not have access to basic services including, social health insurance (INEC, 2013).

A private medical consult for trans individuals typically costs USD $35 to $50, without the cost of medication, which is often quite expensive.  Additionally, the hormone therapy needed by the trans and intersex populations is not often covered by social insurance and has exorbitant costs. In fact, Ecuador does not regularly stock specific varieties of masculine and feminine hormones.  With the new Comprehensive Organic Penal Code, access to a medical consult for hormone therapy is almost impossible to obtain, due to the fact that there is no protocol for such services in Ecuador, and the Department of Health is not aware of established international norms, such as the guidelines developed by the Center of Excellence for Transgender Health in San Francisco.

In additional to collecting this data and supporting these meetings held with the Department of Health, Silueta X has continued operating its own counseling and medical center , while dealing with countless difficulties—namely lack of financial resources. Silueta X also held the first meeting between several governmental and mainstream non-governmental sexual diversity organisations to offer greater support for and achieve a greater impact on the trans population by discussing the common needs felt by all of the groups of Ecuador. In other words, Silueta X wanted to stop creating methodological processes that intend to solve social issues without having the key effected populations present during the design. Thus, the first meeting was held during which sexual diversity groups talked about health, education, employment, and justice for the LGBTI population. It was entitled, “Four Oversights Will be Created for the LGBTI Community in Ecuador” (2013).

The group proposed establishing a department of health oversight and a pilot program focusing on the topic of health.  The results of the oversight only reaffirm the study done by Asociación Silueta X in 2012 (supported by amfAR) and the survey data from the Department of Health’s study done by the National Institute of Statistics and Censuses, which for the 4th time has reaffirmed the need for separate health processes for LGBTI populations.

Although Asociación Silueta X carried out this study as a relatively small community-based organisation, the impact of the study has had a very significant effect. Asociación Silueta X worked with the National Institute of Statistics and Census to incorporate their methodology to implement a national study.  Due simply to the complexity of the trans population, the study was based on the popular “snowball” sampling methodology, which seeks additional participants for the study through interviewees’ friends and acquaintances.

Silueta X’s “Descriptive Study of the Influential Factors of HIV Rates and Discrimination of Female Trans on the Coast of Ecuador in 2012” surveyed 767 transsexuals on the coast of Ecuador. In order to carry out the survey and administer the questionnaires, Asociación Silueta X hired Ramón Aranguren, a Spanish Neuropsychologist specialising in scientific research who traveled from his home country of Spain to make a commitment to work with the organisation. An agreement was also reached with the State University of Guayaquil department of Psychology and its scientific ethics committee to constantly monitor the development of the proposed methodology.

In order to collect both the physical and digital data for the study, a questionnaire was developed that included questions focuseing on lived realities, such as socio-economic status, legal issues regarding gender identification, and sexual and reproductive health issues specific to trans individuals.  The questionnaire was created by the research team and was reviewed and approved by the Scientific Ethics Committee of the Department of Psychology of the University of Guayaquil.  The questionnaire was distributed in person to a sample of 621 transsexuals and transgendered people.  An additional 146 trans people were reached online. Awealth of information was obtained regarding the transsexual community in Ecuador, because a trans-led organisation—Silueta X—was the implementer.

The study confirmed that trans individuals have needs and demands that are not met by the department of health, such as hormone therapy and the use of aesthetic surgeries without risk of silicone use, to name a few.  All in all, Silueta X recognises that a process that provides healthcare under a gender affirming doctor in order to achieve an adequate transition without much risk to one’s health is vital for transgender individuals.

The Asociación Silueta X study also revealed that 55% of the trans population does not have access to healthcare in Ecuador.  This is a very troubling figure if we review the needs of the trans population that have not been adequately met due to the lack of access to healthcare in the country.  Moreover, 47% reported to be engaging in risky sexual behaviours, such as not using a condom on one or two occasions over several encounters.  Condom use must be consistent, and this results in a greater risk of exposure to HIV for the transsexual population, according to the data reported by Silueta X’s study.

Another health issue is that there is high mortality among trans individuals improperly using silicone (Salazar, 2013).  Silueta X, troubled by this issue, worked to create a protocol for better “gender affirming” services to meet the needs of the transgender population, given that the Department of Health, in spite of these deaths, has not paid much enough attention to this issue (“Death: The price to pay for beauty,” 2011).

Another issue specific to HIV and trans individuals is the lack of care being taken with regards to condom use, based on certain prejudices and religious beliefs.  Rejection by medical personnel due to the anatomy of trans populations does not allow service providers to adequately serve different gender identities and offer them all the necessary information in order to use adequate prevention regarding condom care and use.  These factors therefore become complimentary factors to the lack of adequate health services.

The first LGBTI-specific counseling and medical center in Ecuador

Recognising these challenges, Silueta X developed a sexual health strategy thatincludes a medical center and a gender-affirming sexual health handbook.  “Incentive to Make Your Femininity a Reality” is now available at the first LGBTI Counseling/Medical Center in Ecuador that opened its doors in May of 2013 (Figure 8). In launching the medical center, Silueta X engaged numerous media outlets, announcing the launch using technology and social networks.

Supported by amfAR, Asociación Silueta X responded to the the trans population’s need for a place where they can have access to healthcare without being mistreated by healthcare personnel or even other patients.  These findings were based on the qualitative study mentioned above, in which 20 focus groups were held throughout the country.  Each discussion resoundingly suggested a specific healthcare space for the trans population was vital.

The medical center was launched as a clinic for all LGBTI individuals to be as inclusive as possible; however, the clinic primarily services trans individuals, simply due to the turnout of the organisation’s community members and social networks.

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Figure 8. Facebook page of the first LGBTI-specific counseling and medical center in Ecuador

Therefore, in spite of its name, the clinic specialises in trans health.  To date, the clinic has been successful in serving trans clients because of the focus on the health issues that matter to the population, including supporting positive body images for trans people and helping them claim their sexual lives.  By addressing structural issues, Silueta X is more likely to see greater enrollment in such health services.

It is undeniable that identifying these challenges and finding solutions for them has not been easy.  Nevertheless, Silueta X recognises the power of social networks and communication technology to increase the organisation’s reach and effectiveness.  In addition, Silueta X has been able to offer comprehensive services, including both physical and mental health, and to collect patients’ medical data.   HIV testing is required for individuals before they receive hormone therapy.  Thus, the number of community members seen at the clinic is growing due to the trans- specific healthcare that is provided.  Silueta X provides effective and healthy hormone therapy provided by specialised doctors, and promotes this service to draw clients in on both a fieldwork level and through technologies such as social networks, e-mails, and even phone apps like Whatsapp.  During hormone therapy, the staff speaks to patients about the importance of caring for their sexual health by using support from the Department of Public Health. At the same time and as part of the process (with their consent), Silueta X asks them to undergo HIV testing.

It is worth mentioning that coming up with this process has not been easy.  In 2013, Silueta X did empirical work in implementing proposals for hormone therapy follow-ups.  Afterwards, staff was offered financial resources to develop a formal protocol for appropriate use of hormone therapy as administered by a doctor.

It should be noted that the process of hormone therapy is important in identifying people who are living with HIV.  In fact, we have considered all necessary factors in order to protect the confidentiality of those who have been tested.  This has given the population confidence in us, and caused them to promote the services that we offer.

Of the nearly 271 female trans individuals who have a chart at our medical center, 135 have been tested.  Twenty-eight of these trans individuals have tested positive for HIV.  It should be pointed out that the center uses rapid tests and therefore these data should be verified atpublic medical centers that administer micro-ELISA and western blot tests.  In this aspect we are still working out an agreement with the Department of Health so that we can access data that we have sent regarding these 28 individuals who tested HIV positive.

The first signs of satisfaction have been seen in our very own members.  In spite of not having yet been formally documented, they have made their satisfaction publicly known.  Below is a local news piece on the care provided at our medical center and a statement by one of our trans members:

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Figure 9: Local news piece on the care provided at the LGBTI medical center at https://www.youtube.com/watch?v=YsQm8Mq0Wh4

The whole program has been based on the experience and goodwill of the doctor and psychologist currently working at our medical center.  Due to the fact that the classification and behaviour of the trans population does not vary for the most part, our model that is under development could be implemented in other places in Ecuador and across Central and South America

Conclusion

In our experience, we estimate that Silueta X’s innovative ‘gender affirming’ sexual healthcare and HIV prevention methodology, complimented by both advocacy and demand creation activities through the use of communication technology, has affected the trans population in positive ways.  Even with the lack of support received by the Department of Health, which has only passed legislation but not acted to implement it.  Based on several meetings, including one held at the university hospital during which we thoroughly discussed the issue of hormone therapy, we recognised that other centers could not meet the demand for hormone therapy at this time. Thus, we created our own center as a pilot project to entice the government to implement their legislation.  Additionally, through our program, Silueta X is able to collect and store medical outcomes of trans clients, which could benefit researchers, advocates, and government.  We even hope to increase the capacity of our services to expand on a national level since there are many trans individuals who want to have access to our services, but unfortunately are from other provinces where access is difficult. Our pilot project is becoming a comprehensive HIV care model for the trans population, and we have decided that it is useful to share our experience so that it can possibly be replicated in other contexts.

ICTs have been the cornerstone of our successful efforts to advocate for and serve trans individuals.  With our daily e-blasts, Silueta X is recognised as a regional leader on trans rights and GLBTI health.  We consistently are looking for new technologies that would further our cause.  Clearly, in this day and age, these technologies make it easier to help trans individuals and allies get involved in demanding their rights.

Our next challenge is signing a formal agreement with the Department of Health, so that we can link our medical database to the national one (especially in cases of HIV diagnosis).  Unfortunately, this issue is a major challenge due to the fact that the new Comprehensive Organic Penal Code penalises the divulging of medical data.  The Department of Health will not come to an agreement on the confidentiality of the data of people who have had a seropositive test result since there is a new penal law, and many public healthcare officials do not want to provide public information on statistical data regarding HIV prevalence unless they divulge it themselves whenever they see fit.  So the information becomes monopolised using the new law as justification when the statistical data do not have anything at all to do with the new law.

Of our 28 trans members living with HIV, close to 13 have come back to our offices and continued therapy with the psychologist.  Nevertheless, we have 12 that are not participating, and we can identify those who have quit.  Our goal is not only to identify HIV prevalence, but also to give follow-up to trans individuals living with HIV.  Above all, we understand that individuals living with HIV are still discriminated against in Ecuador, and it is necessary to consider that an HIV-positive trans individual is dually discriminated against.

We will continue researching how ICTs can help Silueta X attract and educate the LGBTI population, provide outreach, and pressure state institutions to take action.  While we have been taking full advantage of ICTs, we believe that perhaps there are means that we have not identified to improve the productivity of our outreach.

Acknowledgements

I want to thank the team of individuals who worked with me to write this manuscript, first in Spanish and then to translate it into English.

References

Asociación Silueta X (2012).  Estudio descriptivo de los factores influyentes, en la incidencia del vih y discriminación de las trans femeninas en la costa ecuatoriana, durante el 2012.  Retrieved from

https://siluetax.files.wordpress.com/2012/06/estudio-descriptivo-de-los-factores-influyentes-en-la-incidencia-del-vih-y-discriminacion-de-trans.pdf

Asociación Silueta X (2013). Libro del Informe de Acceso a la Justicia y Derechos

Humanos de los TILGB en el Ecuador 2010 al 2013. Retrieved from: http://siluetax.files.wordpress.com/2012/06/informe-del-acceso-a-la-justicia-y-derechos-humanos-de-los-tilgb-glbti-lgbti-orientacic3b3n-sexual-e-identidad-de-gc3a9nero-en-el-ecuador-2010-al-2013.pdf

Constitution of the Republic of Ecuador (Vol. 2, p. Articule 11). (2008).

El Telegrafo (2013). ‘Hoy se inaugura el primer centro de salud trans-lésbico’. 2013, May 8). Retrieved from: http://www.telegrafo.com.ec/sociedad/item/el-55-de-la-poblacion-glbti-sin-atencion-medica.html

Forum, Psychology and the Department of Health on the depathologization of transsexuality. (2012, October 15). Retrieved October 15, 2014.

Four oversights will be created for the GLBTI community in Ecuador. (2013, January 1). Retrieved October 15, 2014.

Garcia, M. (2012). Ecuador: Lesbian Activist Appointed to Presidential Cabinet.  The

Advocate, January 24, 2012. Retrieved from http://www.advocate.com/news/daily-news/2012/01/24/ecuador-lesbian-activist-appointed-presidential-cabinet

National Institute of Statistics and Censuses. (2013). Retrieved from: Programa Nacional de Estadística. Retrieved from: http://www.ecuadorencifras.gob.ec/documentos/web-inec/Normativas%20Estadisticas/Planificacion%20Estad%EDstica/Programa%20Nacional%20de%20Estadistica.pdf

Martínez Dalmau, Rubén. Ecuador: Los 444 artículos de Montecristi. Retrieved from http://www.rebelion.org/noticias/2008/7/70772.pdf

Pan American Health Organization  (2012). Respuesta Nacional a la Epidemia del VIH. Retrieved from: http://www.paho.org/ecu/index.php?option=com_docman&task=doc_download&gid=398&Itemid=.

Salazr, G, (201). ¡La muerte, el precio a pagar por la belleza! Extar.ec. (2011, August 11). Retrieved from: http://www.extra.ec/ediciones/2011/08/25/especial/la-muerte–el-precio-a-pagar-por-la-belleza/

Salazr, G, (2013). ¡Primer consultorio médico trans! Extar.ec. (2013, May 1). Retrieved from: http://www.extra.ec/ediciones/2013/05/09/especial/primer-consultorio-medico-trans/

Salazr, G, (2013). ¡“Cristina” murió por querer ser hermosa!. Extar.ec. (2013, May 3). Retrieved from: http://www.diario-extra.com/ediciones/2013/05/06/cronica/cristina-murio-por–querer-ser-hermosa/

Biographical Statement

Diane Marie Zambrano Rodríguez was born on March 16, 1982 in Guayaquil – Ecuador.  She is a male to female transgender activist working for human rights and LGBT issues. Diane is currently the president of Silueta X, a trans specific health and advocacy organisation as well as the representative of the “LGBTI Observatory of Ecuador”. In 2009 she successfully advocated for the Ecuadorian government to legally allow transgender people to change their names. During the elections of February 2013, Diane became the first openly transgender candidate to run for public office in Ecuador. Through Diane’s intense advocacy, she was able to obtain funding from multiple donors for a trans-specific health care center in Guayaquil that specialises in hormone replacement therapy.

Editorial

Darrin Adams
Kent Klindera
Christopher S. Walsh
R. Cameron Wold

Published Online: November 15, 2014
Full Text: HTMLPDF, FULL ISSUE

Abstract

This Special Issue of Digital Culture & Education (DCE) provides innovative programmatic approaches to HIV prevention and care services for gay men, other men that have sex with men (MSM) and transgender persons using information and communication technology (ICT) at a time when these same populations are experiencing an alarming upward trend of new HIV infections. During a successful participatory consultation in Washington D.C. in May 2013 hosted by the U.S. Agency for International Development (USAID) and co-supported by the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR), amfAR, the Foundation for AIDS Research, and the National Institutes of Mental Health (NIMH), representatives from Africa, Asia, the Caribbean, Latin America, Europe, Australia and the United States shared innovative uses of communication technology across HIV research, programs, outreach, advocacy and public-private partnerships.   Believing it crucial to share their innovations more widely—through open-access channels—led us to working in partnership with these frontline workers, activists, researchers and educators to further document and share their technological innovations in different global contexts.  Importantly, we prioritised working with frontline workers and activists by providing cyclical and targeted writing mentoring to assist them in writing about their successful digital interventions. Disseminating this timely work through open-access channels, like Digital Culture & Education (DCE) means that researchers in less resourced institutions, practitioners and activists in the field and the general public can better understand how ICT, particularly mobile technologies, provides unprecedented opportunities to more effectively reach and engage gay men, other MSM and transgender populations across the HIV prevention, testing, treatment and care cascade.

Keywords: HIV, gay men, men that have sex with men (MSM), transgender, Information and communication technology (ICT), HIV prevention, HIV treatment, Internet, communication, mHealth

Introduction

This Special Issue of Digital Culture & Education (DCE) celebrates and shares the timely and crucial work of frontline workers, activists, researchers and educators working in the field of HIV prevention, testing, treatment and care.  It builds on, and extends. the work included in an earlier collection of related open-access articles published in this journal entitled, ‘Building the HIVe’ (Singh and Walsh, 2012).  This Special Issue acknowledges that combination HIV prevention, that draws on “evidence-informed strategic, simultaneous use of complementary behavioural, biomedical and structural prevention strategies” (UNAIDS, 2010, p.5) can effectively and successfully work to address the contextual and diverse needs of gay, other MSM and transgender populations.  The articles presented in this Special Issue emerge from a successful technical consultation entitled ‘Innovative Use of Communication Technology for HIV Programming for MSM and TG Populations” held in Washington DC in May 2013. The consultation and the articles presented here recognise the strong synergy between biomedical and social science approaches to HIV that work by:

  • Understanding emerging trends in gay men, other MSM and TG populations’ use of ICT;
  • Identifying innovative programmatic approaches and lessons learned for reaching gay men, other MSM and TG populations using technology;
  • Informing strategies for future gay men, other MSM and TG populations’ programming and research; and
  • Working to engage the private sector and public health partners in the use of ICT to better reach gay men, other MSM and transgender populations with HIV prevention and care messages and linkage/referrals to social and health services.

As a result of the technical consultation, nine important recommendations[1] emerged from discussions among diverse frontline workers, activists, researchers and educators (Alexanderson, Chintalova-Dallas and Cornman, 2013):

  1. Develop targeted content that specifically addresses TG populations’ needs
  2. Foster intersectoral collaboration
  3. Understand the strengths and limitations of virtual and physical spaces and identify opportunities to incorporate both into HIV programs
  4. Present the human face of HIV
  5. Think of health providers as users too
  6. Improve monitoring and evaluation for ICT programs
  7. Know the audience
  8. Respect and protect
  9. The time to prioritise ICT is now

The articles presented in this Special Issue of DCE take up, exemplify, illustrate and provide timely guidance on current innovations and lessons learned across diverse cultural contexts. The Special Issue contributes, collectively, to make the above recommendations a reality in order to stem the tide of new HIV infections among gay men, other MSM and transgender populations.

Leveraging ICT to transform current HIV research, prevention, treatment, care, support services and programing

Transgender persons and men who have sex with men (MSM), including gay-identifying men, face an alarmingly high burden of HIV globally. This is confirmed by high HIV prevalence and where available, incidence rates (Beyrer et al., 2012; Sullivan et al., 2009; Baral et al., 2013). In available global HIV incidence rates among MSM, HIV infection is significantly higher for MSM than in the general population over a one-year period. For example, in Kenya, Malawi, and Thailand, HIV incidence over a one-year period among MSM is reported to be 5.8 percent, 7.1 percent, and 5.9 percent, respectively (Baral IAS 2013; Sanders et al., 2012; Van Griensven et al., 2013). HIV prevalence among MSM in high-income settings surprisingly mirrors their low- and middle-income country counterparts. Overall new infections are on the rise in the United States, particularly among young black MSM (Sullivan et al., 2009; CDC 2012; Maulsby et al., 2013; Sullivan et al., 2014). The UK, Western Europe, and Australia have also experienced recent increased HIV incidence increases among MSM (Phillips et al., 2013; Sullivan et al., 2009; Murray et al., 2011).

Insufficient data on HIV prevalence or incidence exists for transgender persons worldwide. A recent global systematic review (Baral et al., 2013) reports transgender women are nearly 50 times more likely to be living with HIV, than adults in the general population and their pooled HIV prevalence was reported at 19.1 % for the countries were data was available. These data indicate a high burden of HIV in transgender women worldwide.

Currently, HIV prevention, treatment, and care programs still remain largely unreachable and often unavailable for many gay men, other MSM and transgender persons. Online sampling of over 3700 MSM in 140 countries reports only 35% had access to HIV testing, 43% to treatment, 35% to condoms and less than 25% to condom-compatible lubricants (Ayala et al., 2013).  A global review reports that MSM are recipients of a small proportion of total HIV prevention interventions (Sullivan et al., 2012). Little is known on the use of and accessibility to HIV services among transgender persons globally, as scarce data exists evaluating evidence-based HIV interventions among this population (De Santis et al., 2010; Garofalo et al., 2012).

HIV research, services and programs for gay men, other MSM and transgender persons are often lumped together under the umbrella term ‘MSM’, yet these populations’ sexual behaviours, practices and HIV risk behaviours differ considerably. Gender identity, gender expression, sexual behavior and sexual orientation are factors that need to be considered separately (Wolf et al, 2013). These categories and their local understanding shift—in scope and perspective—at the global, regional, country, and even municipal levels The ubiquity of ICT and new and emerging applications—including geo-social apps (Grindr, Jack’d, Hornet, MISTER, etc.)—provide unprecedented opportunities to complement, even transform, current  HIV research, prevention, treatment, care and support services and programing to fill the data and service provisions’ gaps for these key populations. Gay men, other MSM and transgender persons use apps on smartphones and websites to find romantic and sexual partners (Allman et al., 2012; Beck et al., 2012; Chaiyajit and Walsh, 2012; Dasgupta, 2012: Henry et al., 2012; Scheibe, Brown and Bekker, 2012; Singh and Walsh, 2012; Shenck and Singh, 2012; Allison et al, 2014). The articles in this Special Issue take a step forward in further addressing these issues and reporting on successful and innovative programmatic approaches.

Networking to build the HIVe

This Special Issue of Digital Culture & Education (DCE) showcases the diverse ways gay men, other men who have sex with men (MSM) and transgender persons engage and use ICT for HIV research, prevention, treatment, care, support services and programing.  The purpose of this Special Issue is to share and learn from non-governmental and community-based organisations’ innovative practices using digital technologies to scale up HIV-related services and support for sexual minority communities worldwide and to continue and improve the ‘Building the HIVe’ work begun in 2012 (Singh and Walsh, 2012).

Forty-four prominent HIV activists, scientists, researchers, entrepreneurs and public health leaders shared and debated how the internet, social media, and other forms of ICT are improving—or have the potential to improve—the impact of HIV programs for gay men, other MSM and transgender persons. Meeting participants included representatives from Africa, Latin America, the Caribbean, Asia, Europe, Australia and the US.  The goal of the meeting was to provide a forum for key stakeholders in HIV research, programming, implementation and evaluation to take stock of important developments in the field and develop key recommendations to enhance the use of ICT in the delivery of HIV prevention and care for gay men, other MSM and transgender persons (Allison et al., 2014). Following the consultation in Washington D.C. in May 2013, all participants were invited to submit manuscripts for the Special Issue. The call for manuscripts was broadened to include other community-based organisations and partnerships innovating by leveraging ICT productively in the fight against new HIV infections.

This Special Issue of DCE complements academic and biomedical publishing through introducing a dynamic writing mentorship process with academics, researchers and activists to assist frontline and community-based organisations publish their innovations, results and ‘lessons learned’. We drew on a cadre of experienced professionals who provided pro-bono writing mentorships for those individuals with less experiencing writing up their successful programmatic approaches into journal articles. We undertook multiple rounds of editing and peer reviewing and provided access to critical resources often unavailable to individuals working in community-based and led organisations. Recognising the diversity of authors across professional, academic, and English language proficiencies, this Special Issue highlights community-led efforts through this unique publishing opportunity. An important goal of this Special Issue is to publish successful interventions through open-access channels in their entirety, not just the abstracts.

This Special Issue showcases a rich and representative sample of innovative programming, findings and recommendations from different contexts.  Guest Editors and authors from the Special Issue attending the 2014 International AIDS Conference in Melbourne Australia highlighted their work at the 2014 MSM Global Forum Pre-Conference: ‘Setting the Pace: Gay Men, MSM, and Transgender People in the Global AIDS Response’.  All of the articles from this Special Issue will also be added to The HIVe, an open-access networked ecology of HIV activists, practitioners, researchers and scholars. Following this, an edited and expanded book will be published under a Creative Commons (CC) license, including articles from this and the previous Special Issue. This forthcoming edited book will be completely open-access and shared widely through our collective networks.

DCE continues the journey to build The HIVe by developing, exploring, and substantiating the creative and effective merging of HIV and ‘e’ around sexual-social practices and networks, which can shape and influence the future of interdisciplinary and interconnected public health, human rights and education programs and policies (Singh and Walsh, 2012). The HIVe is a constantly evolving alternative resource for frontline and community-based workers to access social science and biomedical research and prevention practices that are normally inaccessible because this research is not commonly published in open-access journals.

Diverse voices, unprecedented innovation

With ten contributions from diverse settings working across HIV research, prevention, treatment, care and support we have organised the Special Issue into four sections.  Section one presents formal research from Asia and the US with HIV positive MSM which has implications for scale up of HIV services for MSM and transgender persons. The next section highlights the successful work of international NGOs working in collaboration with community-based organisational partners in Central America, Ghana and China. The third section showcases four community-led interventions in Sweden, Thailand, Tanzania and Ecuador. Then section four provides a new perspective on the potential application of public-private partnerships in the use of ICT, particularly geo-social apps, in reaching gay men and other MSM with important HIV health related information in Australia and the US.

Scaling up HIV services for MSM and transgender communities

In their article “Achieving HIV risk reduction through HealthMpowerment.org (HMP) a user-driven eHealth intervention for young Black men who have sex with men and transgender women who have sex with men”, Kathryn E. Muessig, Nina B. Baltierra, Emily C. Pike, Sara LeGrand and Lisa B. Hightow-Weidman succinctly illustrate how young, Black men who have sex with men and transgender women who have sex with men (YBMSM/TW) who are disproportionately at risk for HIV and other sexually transmitted infections (HIV/STI) can be reached through an online mobile platform. HMP’s platform is an innovative mobile phone optimised online intervention that utilises behaviour change and gaming theories to reduce risky sexual behaviours and build community among HIV-positive and negative YBMSM/TW.

Benjamin Hanckel, Laurindo Garcia, Glenn-Milo Santos and Eric Julian Manalastas present work that confronts the sexual stigma, HIV-related stigma and isolation HIV-positive gay men and other men who have sex with men (MSM) experience when accessing information related to HIV.  Their study presents the human face of HIV by exploring the technology use of HIV-positive MSM. Their research was part of a formative assessment undertaken at the initial stage of the development an information and communications technology (ICT) resource and peer-support web-app for HIV-positive MSM in Southeast Asia.  Hanckel, et al.’s work tentatively illustrate how the capability deprivations experienced by HIV-positive men can be overcome by mobilising Amartya Sen’s capability approach to developing an ICT resource that addresses the deprivations and information deficiencies of HIV-positive MSM by enhancing peer support and increasing access to HIV-related information and resources.

Working in collaboration with community-based partners

In their article, “Hidden on the social media”: HIV Education on MSM through Cyber-educators in Central America”, Jorge Rivas, Jennifer Wheeler, Marcos Rodas and  Susan Lungo present how they worked with The Pan-American Social Marketing Organization (PASMO) to develop a combination prevention intervention in Central America that delivers HIV prevention behavior change communication (BCC) messages, products, services, and referrals to promote improved condom and condom-compatible lubricant use, HIV testing, violence reporting and the use of complementary services. This innovative online “cyber-educator” intervention for MSM provides virtual one-on-one BCC and HIV counseling and testing referrals launched.

Kimberley Green, Phillip Girault, Samuel Wambugu, Nana Fosua Clement and Bashiru Adams describe the ‘Strengthening HIV/AIDS Response Partnerships with Evidence-Based Results (SHARPER)’ intervention which reached 92% of the estimated number of MSM in Ghana with HIV prevention interventions.  Achieving this significant reach at scale was the result of changing their earlier approach using face-to-face traditional outreach activities which only reached and estimated half of MSM in Ghana.  By being innovative, resourceful and collaborative with MSM affiliated with CBOs, they began using social media to reach an additional 15,440 unique MSM in addition to the 12,804 MSM they reached through traditional outreach activities involving peer educators.

In China gay men and other MSM who use ICT to meet up are less likely to visit ‘traditional’ venues where they can receive interpersonal HIV prevention interventions. In their article, ‘Two internet-based approaches to promoting HIV counselling and testing for MSM in China’, Matt Avery, Gang Meng & Stephen Mills present how FHI 360 and Guangzhou Tongzhi (GZTZ) piloted separate, but complementary, approaches to using ICT to promote uptake of HIV counselling and testing (HCT) among gay men and other MSM in three Chinese provinces: Yunnan, Guangxi and Guangzhou.  Both interventions included dedicated websites featuring online risk assessment and appointment making, crowd-sourced service promotion messages and dissemination via participants’ microblog accounts and social media profiles.

Community-led interventions

Nicklas Dennermalm introduces how the Swedish Federation for Lesbian, Gay, Bisexual, Transgender and Queer Rights (RFSL Stockholm) designed the Röda Paraplyet webpage in collaboration with male sex workers and Rose Alliance, a leading sex worker organisation in Sweden. His article, ‘Resistance to the Swedish model through LGBTQ and sex work community collaboration and online intervention’ stresses the need for targeted community-based sexual health services in Sweden because sex workers are often viewed as ‘victims in denial’ by public health authorities.  Dennermalm critiques the ways Swedish sexual health interventions traditionally focus on women and utilise face-to-face interventions and exit strategies over interventions targeting male and/or transgender sex workers that utilise harm reduction approaches or low threshold on-line interventions.  His work with Röda Paraplyet illustrates how a broad coalition between organised and non-organised sex workers, LGBTQ organisations, academics and the health care system can creating a sustainable platform of multi-disciplinary knowledge to improve the sexual health and legal rights of sex workers in Sweden and globally.

In ‘TLBz Sexperts! Using Information Technology to Get to Zero HIV Infections among Thai Transgender People’, Nada Chaiyajit argues that because access to sexual health information that serves the needs of transgender individuals is non-existent or severely limited, “Getting to Zero”—the official UNAIDS campaign to achieve zero new HIV infections, zero discrimination and zero AIDS-related deaths—is impossible. Chaiyajit’s article identifies gaps and challenges in HIV services for transgender individuals living in Thailand.  By recognising the need for the ‘de-coupling’ of transgender services from those serving gay men and other MSM, she describes an innovative ICT project, the Thailadyboyz (TLBz) Sexperts! The program is a low-cost, transgender-led, community project offering accurate online transgender-specific sexual health information, social support and legal advice.

Collins M. Kahema, John Kashiha, David Kuria Mbote and Michael R. Mhando’s article describes how Tanzania Sisi Kwa Sisi Foundation (TSSF) used online HIV peer education and outreach methods, particularly with Facebook, to increase HIV prevention knowledge and encourage the use of health services, condoms and lubrication among MSM in Tanzania. Their article, “Bambucha Media: Using social media to build social capital and health seeking behaviour among key populations” describes how TSSF launched educational campaigns using various social media that pre-existing members reported using for social and sexual networking, or “hooking up”. As a community-based organisation with limited resources, TSSF’s Bambucha Media (in Swahili ‘bambucha’ means cool) is innovative in the way it has designed a non-traditional avenue to provide HIV and AIDS information and referral. In a country where sexuality remains a major taboo subject, providing health messaging and forum discussions to educate about HIV, alert users when safe sex supplies are in stock or not, facilitate online discussions and sharing and provide direct peer counselling via private messages when needed and requested not only allows them to open up communication lines with gay men, other MSM, transgender persons and sex workers in the first place, but also enables TSSF to provide needed follow-up on specific and targeted HIV services.

Diane Marie Zambrano Rodríguez’s article, ‘Silueta Z: Lobbying to establish a specialised LGBTI counseling and medical center in Ecuador’ presents Asociación Silueta X which is working to creating accessible living conditions for lesbian, gay, bisexual, transgender and intersex (LGBTI) individuals with an emphasis on the transgender and intersex population In Ecuador.  Silueta X engages social media via social networking sites and apps—especially Facebook—to   provide its LGBTI members with updates about its organisational and advocacy activities.  Silueta X leverages the powerful role of social media and has created specific sites and accounts for different activities.

Forging public-private partnerships

Yves Calmette describes how ‘Ending HIV’, an interactive social marketing campaign based on peer-education principles that incorporates communication, campaign and community mobilistaion initiatives, is working to ‘end’ HIV in New South Wales Australia by 2020.  His article, ‘Ending HIV: an innovative community engagement platform for a new era of HIV prevention’, argues ending HIV is possible.  ACON’s Ending HIV campaign was launched at the start of the 35th annual Sydney Mardi Gras festival. This multiplatform campaign is targeted at gay men to educate them about the real possibility that HIV transmission in New South Wales (NSW) Australia could be virtually eliminated by 2020.

Carl Sandler, a gay social networking entrepreneur and the developer of the geo-social networking app for gay men, MISTER, discusses the enormous reach and untapped potential of private sector geo-social networking. He makes the case for better coordination and flexible funding between the public health sector and the private sector for nimble, timely responses to public health crises while building a sense of community among users of the MISTER app. He argues the public health sector can work effectively with app developers becasue apps can reach thousands of users a day.

Thinking differently about the future of HIV prevention and care with ICT

The editors anticipate this Special Issue will motivate implementing partners and other community-based actors to continue to be creative and innovative in their endeavors to further the use of ICT for HIV services. Individually—and collectively—the articles illustrate the potential impact of innovative programmatic approaches to HIV prevention and care services for gay men, other MSM and transgender persons using ICT at a time when these same populations are experiencing an alarming upward trend of new HIV infections. The articles in this Special Issue present creative, promising, emergent and evolving programmatic approaches to be shared widely through open-access channels.

With the urgent HIV public health crisis growing amongst gay men, other MSM and transgender people, these innovative programmatic approaches offer models to be further tested and shared for ‘scale-up’.  We hope funders can work collaboratively and creatively to fill the anticipated resource gap for HIV funding for 2015 (UNAIDS, 2013), so that populations disproportionately at risk of HIV can continue to benefit from programmatic approaches similar to those presented in this Special Issue. We also acknowledge, congratulate and celebrate the innovative work and dedication of frontline workers in community-based and led organisations, that despite forecasted shortfalls in funding, continue to be innovative programmatically through ICT.  We believe the profound changes brought about by ICT on sexual practices can increase the effectiveness of social and biomedical HIV and AIDS research, prevention and care. Lets us not forget, ‘the time is now’ to continue improving access to health and human rights for marginalised gay men, other MSM and transgender populations.

Acknowledgements

Digital Culture & Education (DCE) acknowledges the success, dedication and hard work of all the contributors to this Special Issue.  Importantly the editors also acknowledge the cadre of writing mentors, peer reviewers and advisors who provided essential pro-bono services to assist us in making the publication of this Special Issue possible. We also acknowledge and thank Jesse Ko for copy editing all of the articles and Andrew Chong Design for the Special Issue’s cover design.  Importantly, we acknowledge the organisations whose support and funding—of many of the innovations presented in this Special Issue—actually make this work possible, including The United States Agency for International Development (USAID), the USAID-funded Health Policy Project, with support from the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR), and amfAR, The Foundation for AIDS Research. We would like to acknolwedge and thank Diego Solares, David Kuria Mbote, Ben Clapham, Joanne Keatly, Tonia Poteat, Billy Pick, Tisha Wheeler, Tim Mah, Cameron Hartofelis, Suzanne Leclerc-Madlala, Ken Morrison, Ron MacInnis, and Javid Syed for their ongoing collaboration and support.

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Biographical Statements

Darrin Adams, MSPH has led research, programming, strategic information, advocacy, capacity development, and empowerment and engagement initiatives among key populations globally for nearly a decade. He is a Senior Technical Advisor for HIV at the Health Policy Project in Washington, D.C. where he oversees and manages a key populations portfolio. Some activities include development of an Asia Pacific Trans health blueprint, regional MSM policy and advocacy interventions in sub-Saharan Africa, development of global programming guidance for MSM programs, and supporting governance strengthening for African regional MSM and sex worker organizations. Previously as a consultant, Darrin advised a country on how to scale up key population services, enhanced capacity of governments and community-based MSM organizations to conduct HIV surveillance, and has published and presented articles and reports that demonstrate a need for integrated, responsible engagement of key populations in all aspects of HIV service design, delivery, and management. Darrin holds a Masters of Science in Public Health from the Johns Hopkins Bloomberg School of Public Health.

Contact: dadams@futuresgroup.com

Kent Klindera, MPH, has 25 years of experience working on health and human rights programming, with emphasis on HIV-related key affected populations, youth, gender, and behavior change communication.  Currently based in New York City, he serves as the Director of the GMT Initiative at amfAR, the Foundation for AIDS Research, managing a portfolio of implementation science grants for HIV service delivery among gay men, other men who have sex with men and transgender individuals (Collectively GMT).  The initiative also supports GMT community led advocacy and service delivery projects, as well as strategies for greater community engagement in research. Previous to amfAR, Kent served as Chief of Party on a USAID-funded male gender norms initiative in South Africa impacting the dual epidemics of gender-based violence and HIV.  He also had a ten-year tenure at Advocates for Youth, directing various initiatives focused on HIV among most at risk youth in the US, the Caribbean and Sub-Saharan Africa.  Kent holds a Masters in Public Health degree from the University of Minnesota and a Bachelor of Science in Political Science from the University of Iowa.

Contact: kent.klindera@amfar.org

Christopher S Walsh, EdD, is an Associate Professor of Education and the Director of Education Programs at Torrens University Australia.  He specialises in digital technologies, literacy, multimodality, international development and HIV education and prevention. Walsh was central researcher on number of highly competitive grants awarded by The Spencer Foundation, The American Foundation for AIDS Research (amfAR), the Australian Research Council (ARC) and the Australian Federation of AIDS Organisations (AFAO) and the European Commission. Currently, he also works as a Senior Research Analyst and Policy Advisor for the Bridges Across Borders South East Asia Community Legal Education Initiative (BABSEA CLE).  He is also the co-founder and co-facilitator of The HIVe.

Contact: christopher.walsh@tua.edu.au

R. Cameron Wolf, PhD, has worked in AIDS-related public health since 1988.  Cameron studied Sociology at the University of Maryland and holds a Master of Science degree from Harvard University and PhD from Johns Hopkins University.  He taught at the University of Maryland and also designed and ran an HIV prevention program for men who have sex with men with AIDS Action Baltimore.  Dr. Wolf began his government service at the HIV/AIDS Bureau in the Health Resources and Services Administration (HRSA) in 2001.  He began work at the USAID Office of HIV/AIDS in Washington, DC in 2003 as Senior Technical Advisor for M&E and later as Senior Regional HIV/AIDS Technical Advisor for USAID’s Regional Development Mission Asia (RDMA) based in Bangkok in 2007.  He served as Acting HIV Team Leader for RDMA from 2010 until his return to the USAID/DC Office of HIV/AIDS where he currently serves as Senior Key Populations Advisor. He has authored numerous publications, reports, journal articles and book chapters on HIV/AIDS.

Contact: cwolf@usaid.gov


[1] For more information see: Innovative Uses of Communication Technology for HIV Programming for MSM & TG Populations: May 2-3, 2013, Washington, DC. Meeting Report

Collins M. Kahema, John Kashiha, David Kuria Mbote & Michael R. Mhando

Published Online: September 25, 2014
Full Text: HTML, PDF

Abstract

Recent surveillance data by Tanzania AIDS Commission has shown HIV prevalence among Men who have Sex with Men (MSM), transgender persons (TG) and Sex workers (SWs) to be well above general population estimates. Vulnerability to HIV among the MSM, TG and SWs has been associated with lack of correct and comprehensive information, informed decision, social and internalized stigma, negative legal and policy environment and language barrier.  This paper will describe how Information Communication Technologies – ICTs, used by Tanzania Sisi Kwa Sisi Foundation – TSSF, has supported communication and access to the health services especially through outreach and referrals among the MSM, TG, and SWs in Tanzania.

Keywords: Outreach, Tanzania, TSSF, Social Media, HIV/AIDS, Referral & Advocacy

Background

Vulnerability to HIV infection among the MSM, TG and SWs is associated with lack of access to correct and comprehensive HIV prevention information and services. These populations face discrimination in every facet of life, including in healthcare settings and in access to essential services (Beyrer, 2014). In Tanzania these populations are at greater risk of acquiring HIV than the general population. Recent surveillance has consistently shown HIV prevalence among MSM, TG and SWs to be well above general population estimates. The Tanzania AIDS Commission reports show of the MSM tested 41% were HIV positive, 43.2% had not used any condom with their last casual sexual partner and only 49.1% used condoms with their regular sexual partners. (TACAIDS, 2013, p. 20). To further compound the issue, HIV and sexual health information in Swahili, the official and widely spoken language of Tanzania, is limited, let alone information and education materials for targeted materials for the MSM, TG and the SWs. Criminalization, stigma, and discrimination also play a part in putting barriers to HIV and health service access. Information communication technologies (ICTs) offer distinct advantages to conventional methods in delivering HIV prevention education and legal counsel. Tanzania Sisi Kwa Sisi Foundation (TSSF) uses social media to reach MSM, sex workers (SWs) and trans persons across Tanzania.

Introduction

The Tanzania Sisi Kwa Sisi Foundation is a registered youth voluntary, non-partisan, non-governmental organization (NGO) led by members of Tanzania’s lesbian, gay, bisexual, transgender (LGBT) community, men who have sex with men, and sex workers. It operates as a national organization, with projects that span the geographic scope of the Tanzania Mainland. TSSF’s goal is to promote the dignity, safety, human rights and fundamental freedom for all persons, without regard to gender, ideological, political and sexual orientations. The organization is guided by the mission to pioneer new standards of hope, equity and involvement of their beneficiary populations. The vision is to have a society free of discrimination, preventable diseases, and where all economic, social, civil and, political rights are enjoyed by everyone.

In order to realize this vision TSSF has the following objectives:

  • Create awareness on issues of human rights for young LGBT and their networks
  • Fight the spread of HIV/AIDS, malaria, tuberculosis, cancer and other chronic and deadly diseases through Information Education, and Communication (IEC).
  • Promote, lobby and advocate improving the status and conditions of the young LGBT persons in Tanzania.
  • To create, raise and promote community awareness on issues on human rights, good governance, stigma and discrimination and their causes and effects within the context of sexual orientation and gender diversity.

TSSF’s experience is validated by growing body of knowledge that identify benefits social media brings on board for HIV prevention, treatment and care for the MSM.

…the growing popularity, decreasing digital divide, and multi-functionality of social networking sites, such as Facebook, make this an ideal time to develop innovative ways to use online social networking sites to scale HIV prevention interventions among high-risk groups (Jaganath D. H., 2012).”

One study found that “Facebook could provide a simple, easy to implement and adopt approach to prevent condom use decline for the short-term and that clinics providing sexual health services to youth might benefit from having a presence on Facebook (Bull, 2012).” Yet while “social networking for HIV prevention is an exciting area that combines HIV prevention/public health, engineering/technology (Young, 2012)” only about 12% of the population have access to the Internet with slightly under a million registered Facebook users by the end of 2012 (Internet World Stats, 2012). In recent years however, Internet enabled mobile phones have been on a rapid increase in Africa, including in Tanzania. According to Ihub – a technology company in East Africa, 79.39% of those who had access to Internet in Tanzania, in 2012, did so through their mobile phones (Mutuku, 2012).

Recognizing the limits on face-to-face HIV and health outreach and awareness among MSM and transgender persons, TSSF undertook an Internet outreach program to reach those who may be unreachable due to stigma, discrimination, homophobia, and/or geography. Calling the program Bambucha Media, “Bambucha” in Swahili is similar to American English language slang for “cool”, TSSF launched educational campaigns using the various sites that pre-existing members reported using for social and sexual networking, or “hooking up”. As a community-based organization with limited resources, TSSF’s Bambucha Media includes health messaging and forum discussions to educate about HIV, alert users when lubrication stock replenished (or stocked out), facilitate online discussions and sharing (or to watch and learn passively), and provide direct peer counselling in private messages when needed and requested.

By providing networking opportunity for the MSM in Tanzania, TSSF has in the process created a non-traditional avenue to provide HIV/AIDS information and referral. In a country where sexuality remains a major taboo subject, TSSF uses social media tools, to communicate in general terms, about health services as opposed to writing directly about HIV services at the first instance. Yet once communication lines have been opened, follow-up on specific and targeted HIV services are then provided.

Road blocks to care

In the few places where LGBTI-friendly health services are available, criminalization and stigma and discrimination maintain low levels of service uptake. As the Tanzania Commission for AIDS in its 2013 strategy, titled  Tanzania Third National Multi-sectoral Strategic Framework For HIV and AIDS (2013/14 – 2017/18) notes:

Stigma and discrimination against MSM remains high, posing a significant challenge to outreach and delivery of [LGBT] friendly health services. Given the criminalization of consensual adult homosexual intercourse, the multi-sectoral national response requires significant cooperation from all key stakeholders to ensure that MSM are reached with HIV and AIDS services. (TACAIDS, 2013)

The Tanzanian penal code criminalizes “canal knowledge against the order of nature.” Indeed the Sexual offenses special provisions of 1998 (Tanzania: Act No. 4 of 1998, 1998), reviewed the penal code and added stiffer penalties for attempt and commission of these offenses. The penalties for these offenses now range from 10 years to life imprisonment

The presence of criminalization, fuels social stigma, and crimes against LGBT persons in Tanzania by creating a hostile environment that is characterised by verbal and physical violence, torture and rape, assault, arbitrary arrest, and extortion (Human Rights Watch, 2013). This environment discourages LGBT persons from self-identifying when they seek health services or even avoid seeking these services all together. By going underground, sexual and gender minorities are deprived of critical health and legal information and the Tanzanian health system is kept unaware of their specific health service needs. It is in this environment that TSSF have brought on innovative tools for outreach, such as those offered by ICT.

Bambucha Media

Social media offers a unique opportunity for HIV/AIDS organizations and other health institutions to disseminate health information and even legal counsel quickly, easily, and anonymously. Recognizing the advantages social media brings in reaching stigmatized individuals, TSSF’s approach is to integrate with social media and dating services popular with LGBT people in Tanzania such as Twitter, Whatsapp, Facebook, Instagram, Marafiki, Manjam, and adam4adam. For those who may lack the means and access for social media and the Internet, TSSF sends bulk messages to mobile phones with health information.

Membership

TSSF is acutely aware how the need to hide for fear of violence and criminalization not only drives the MSM underground where they cannot access services, but it also isolates them from meeting their peers. This not only limits their ability to form social capital, but denies them opportunity to know where to access services or even whether services targeting their sexual practice are available. The Social media strategy is focused on addressing this need for providing information on the available services as well as providing linkages to these services.

The outreach is however challenged by the need to navigate a social and political environment that may perceive growing organizational membership negatively as “recruiting people into homosexuality” rather than enabling personal freedom and protection from S&D. An opposition MP in the Tanzanian Parliament even feels that the existing laws need to be made more stringent so that they can punish those who “induce others to become gays or those who promote the behavior (Muga, 2014)” Under the circumstances, TSSF has to craftily use the social media networking tools judiciously both to provide the much needed information, but also to avoid the much feared characterisation as an organization that “recruits” people into homosexuality.

Confidentiality

To accommodate for different confidentiality needs, TSSF also displays its mobile phone numbers and email addresses on the social networking websites so that the MSM can send messages through the short message services (SMS) or emails. Through this channel, people who do not wish to participate openly on social media platforms can still receive information and make inquiries. This mixed approach has allowed TSSF to reach many different members using the form of communication that works for them (Table 1; Figure 1; Figure 2).

Table 1 – Social media tools and registered members reached

Social Media tool

Registered members

Means of Engagement and tracking participation

SMS

2000

SMS exchanges with a database of 2000 numbers

Facebook

500

Membership likes, comments and shares

Instagram

120

Likes and comments

Adam4Adam

80

Profile views and messages exchanged

Marafiki.com

50

Profile views and messages exchanged

Twitter

40

Re-tweets and favourites

Whatsapp

20

Message exchanges

kehma1

Figure 1: Screenshot of the total number of TSSF online outreach page unique ‘likes’ between October and December 2013

kehma2

Figure 2: Screenshot of total number of people who viewed group posts in the TSSF online outreach page from October 2013 to December 2013

Managing online content

TSSF has volunteer Information and Communications Officer who handles communications needs, including updating the various online and offline communications channels. TSSF’s Director and other staff members are also tasked with capturing new information or events that require immediate response; and in doing so, initiate and sometimes participate in online discussions.

Topic Generation

Discussion topics are determined by monitoring important changes in the political, legal and social environment or gauging popular interests through paying close attention to our member’s inquiries. Large-scale social events that concern the scope of TSSF’s work (e.g., World AIDS Day, International Day Against Homophobia and Transphobia (IDAHOT), Transgender Day of Remembrance, Human Rights Day) might also prompt a discussion. Other times, it is a unique encounter with public officials, health officials and religious or cultural leaders that will encourage us to engage with our online and offline members. This way of engagement accomplishes many objectives by informing our members of current events and information, getting their feedback, and creating a place where they can talk freely about the topic and with each other. Recurring topics of conversation posted by our members include LGBT health, human rights, sexual health and reproductive rights, referral services, employment opportunities, security alerts, and social events.

Effectiveness & Sustainability

Social Media tools have proved to be very effective in disseminating information on health services in Tanzania as the Internet increasingly becomes accessible through mobile devices (Pfeiffer, 2014). Targeted social media websites such as Marafiki, Manjam, and adam4adam bring people with similar interests such as sexual orientation or gender identity. This makes it possible to provide outreach and referral information to MSM, TG & SWs. TSSF’s experience has demonstrated that social media tools, serve to reach even the most isolated individuals, if they have access to the Internet because, people with similar interests tend to “flock” together (Jernigan, 2009).  TSSF also engages in weekly analysis of their reach, tracking the performance of their outreach messages, to find out why some messages outperform others in terms of views, feedback or onward sharing.

In a highly dynamic social media environment, sustainability for TSSF’s approach requires ability to constantly adjust health information to this changing environment. The growing fusion between Internet and mobile phone technology has significantly scaled back barriers associated with running social media advocacy strategies. To ensure sustainability of this social media project, TSSF allocates associated costs across all the other projects under implementation. The justification for this cost allocation is that all projects have a communications component, which is effected through online and offline media. TSSF has also been pursuing a “co-branding” strategy, in partnership with mainstream human rights and donor organizations keen on communicating directly with the MSM, TG and SWs in Tanzania. The co-branding approach provides some income that goes into the Social media communications kitty, with the clear desire to making it sustainable in the long run.

Challenges

Given the precarious state of LGBT rights in Tanzania, TSSF is often faced with scepticism about its ability to exist while maintaining its mission and objectives. It becomes important to answer such questions, typically asked by potential members, institutional partners, or government, comprehensively to preserve confidence in its work.

The second challenge has to do with resources; particularly as it relates to attracting and retaining staff members. Managing the numerous social media interactions especially when members increasingly require prompt responses required a fulltime staff member. This has not been possible due to limited resources to hire persons with relevant communication skills.

Another challenge has to do with the language barrier. Since most people understand Swahili, it becomes necessary to translate most of the documents and discussion topics to Kiswahili. Yet it is not always possible to translate scientific  and technical terms (e.g., anal warts, transgender) leading to some people who have yet to encounter these realities to be left out of the discussion forums or even at times to assume things not under discussion.

Another recent challenge has been the withdrawal of TSSF’s registration due to the organization’s presence in online and social media.  On the 4th of April 2014, TSSF’s registration was withdrawn by the government and the reason given was that their social media program was perceived as advocating for homosexuality (Mpekuzi, 2014). This follows a Facebook post that TSSF had posted online as follows:

“je wewe in mwanaume anayejihushisha katika mapenzi ya jinsia moja? TSSF inakualika katika semina fupi, itakayofanyika kesho Ijumaa ….maada zitakazoongelewa ni: Magonjwa ya ngono yanayowaathiri kuchu; Namna ya kujilinda na magonjwa hayo, kujiepusha na magonjwa hayo na tiba …(Are you an MSM? TSSF would like to invite you for a short seminar tomorrow on Friday, ….the agenda will be about Sexually transmitted diseases, and how you can prevent or treat them…)”

The ensuing National debate however proved quite productive for even greater reach for TSSF’s message. Because the news was broadcast over a prolonged period of time, through mainstream media, even those living deep into the country where the organization would never have had resources to provide outreach heard of TSSF’s work. As a result, many people have been writing to TSSF seeking linkages to HIV and other health services.

Examples of ICT use by TSSF

The following snapshots of online discussions, in Swahili with English translations, demonstrate how communications with the MSM can be initiated in a conservative cultural context. The first presents information on an MSM friendly health clinic. At this clinic the MSM are advised to seek services regardless of their sexual practice because the clinicians are competent and friendly enough to engage with them. Just like the other cases below it, HIV/AIDS conversations are not discussed directly since such upfront engagement would be considered culturally unacceptable. However, such information is progressively introduced in the comments sections or at the point of health service uptake. It is noteworthy that even this rather laid back approach to outreach has been criticised as being too upfront for the Tanzanian audience (Muga, 2014).

Discussion 1: Facebook Outreach for Health Services

CLINIC CLINIC CLINIC CLINIC CLINIC

Hivi Unatambua kwamba Clinic yako ya Afya Bora Inafunguliwa hadi Juma Mosi na pia haiangalii wewe ni Bottom, Top, Versetile au Bisexual na pia unatambua kwamba unaweza hata kuja na mwenza wako kwaajili ya uchunguzi wa Kiafya zaidi??

Bado hujachelewa fanya hima uje uonane na wataalamu mahiri ambao wataweza kujibu maswali yako yote yanayohusiana na Ujinsi na Ujinsia wako au Afya ya Mkunduni.Pia unaweza kuwasiliana moja kwa moja wa wataalamu wetu kwa njia ya simu ya mkononi.

[Contact phone numbers removed]

Waweza ongea nao na kupanga mikakati ya kukutana.

Tafadhali tambua Afya Bora ndio Msingi Bora penda maisha jali Afya yako.

Translation

CLINIC CLINIC CLINIC CLINIC CLINIC

Do you realize that clinic for your health and wellbeing is always opened even on Saturdays and it does not discriminate whether you are Bottom, Top, Versetile or bisexual? And also do you realize that you can come even come with your partner for screening in order to remain Healthy??
But you are not yet late; make effort to come and meet vibrant professionals who will answer all your questions about sex and sexuality related to your health.  You all contact us our experts through mobile phone numbers.
[Contact phone numbers removed]
you can talk to them and schedule when to meet with them.
Please note that good health is the good foundation [for life]; love life, care about your health.

Discussion 2: Facebook Discussion the Experience of LGBT High School Students (120 views)

KUCHU/GAYS: Jamani hili swala mashule kuwa na sheria ya kuwafukuza shule wale wanaogundulika kuwa ni gays limeota mizizi sasa.

Jana mtoto wa jirani yangu alirudishwa nyumbani kutoka boarding school kwa kuwa alihisiwa anavitendo vya kishoga. kwavile baba wa mtoto yupo safarini mama wa mtoto aliniomba nimsindikize mpaka shuleni tukasikilize hayo mashtaka. tulipofika tuliambia kuwa yule mtoto alikuwa akihisiwa anavitendo vya ushoga na kinyume ya taratibu za shule ile.

Tulipopata maelezo ya awali toka kwa mwalimu nilimhoji Mwalimu Mkuu na Patron wa wanafunzi kwa kumuuliza ya kwamba waliwezaje kutambua kuwa huyo mtoto ni shoga, Patron wa shule alijibu kwa kuanza kusema ya kwamba wanafunzi wenzake ndio waliomripoti kuwa ni shoga/Kuchu.

Nikawauliza tena “Je wao kama watoa maamuzi waliwahi kumkuta akifanya vitendo hivyo walivyo muadhibu navyo?” walinijibu Hapana ila waliegamia kwenye kauli za wanafunzi.

Swali la mwisho nikawauliza “Je walimpa Mtuhumiwa fursa ya kumsikiliza ama kumkanya?”….

Tafadhali unaweza kututumia kupitia email yetu ya Tanzania Sisi Kwa Sisi Foundation tanzaniasisikwasisi@yahoo.com

Translation

NI Kuchu / GAYS : Friends this question of expelling students found to be gay has taken root in our schools

Yesterday my neighbor’s son was sent home from boarding School after being suspected of homosexual acts. As the father of the child had been traveling the mother asked me escort the student back to school to be told of the charges. When we arrived we were told that the child had been suspected of homosexual acts and is contrary to the school rules.

Initial details from the head teacher I interviewed and the school patron of how they recognized the study was gay, the school Patron responded by starting to say that it was his fellow students who reported him of being gay/kuchu.

I asked them again, “since they are the decision makers had found the student doing the acts for which they were punishing him? ” No they said, but they were relying on information from the other students.

The last question I asked is “whether they had given the student an opportunity to defend himself or even admonish him? ” ….(read more)

Please send us your observations through our Tanzania Sisi Kwa Sisi Foundation email

tanzaniasisikwasisi@yahoo.com

Discussion 3: Questions & Answers (Q & A) session on Facebook peer education (503 views)

JE! UNA MASWALI YENYE UTATA KATIKA MAISHA YAKO YANAYOHUSU HALI YAKO YA KUWA GAY, LESBIAN, BISEXUAL, TRANSGENDER & INTERSEX??

Tafadhali tunaomba mtuandikie Maswali yanayowatatiza katika Maisha juu ya hali yako ya kuwa Gay, Transgender,Bisexual, Lesbian and Intersex tutakujibu na kukupa maelezo kwa Kina.

Translation

DO YOU HAVE ANY CONTENTIOUS QUESTIONS REGARDING YOUR BEING GAY, LESBIAN, BISEXUAL, OR TRANSGENDER AND INTERSEX??


Please we are requesting you to write to us any question that you may have regarding your being Gay, Transgender, Bisexual, Lesbian or intersex and we shall give you detailed responses.

Discussion 4: Call to Report Human Rights abuses & Outreach (629 views)

UDHALILISHAJI UDHALILISHAJI UDHALILISHAJI

Ndugu jamaa na marafiki na wapenzi wetu wote tukiwa kama wadau wa kusimamia haki za kila mwanadamu Tumehudhunishwa na Wimbo wa mpendwa wetu na Rafiki yetu MATONYA alioutoa hivi karibuni unaojulikana kwa jina la “Agwelina” unaopinga Usagaji .

Tunatambua kweli haya ni maisha ya ndani ya kila mtu ambayo kwa namna moja ama nyingine ndivyo anavyofurahia maisha. Tumesikitishwa na ujumbe kwenye wimbo huu kwani umezungumzia upande mmoja wa shilingi tu yaani mabaya ya wasagaji.Kwani hawa hawana mazuri yanayofaa kuimbwa??

Tafadhali ukiwa kama mdau, mshirika, rafiki ndugu pinga udhalilishaji huu kwa kuunga hii kapmeni na kutonunua wala kusikiliza nyimbo wala cd za matonya.

Na hii iwefundisho kwa watu wengine na wenye tabia za kuzungumza mabaya na kupotosha ukweli kuhusu homosexuality tunatambua kila mtu anahaki ya kuishi vile anavyotaka na anavyojisikia imefika mwisho sasa kudharaulika na kunyanyasika kwa vile tu ya jinsi na ujinsia wetu

Tafadhali tunaomba usambaze ujumbe huu kwa wadau wote na members wote na wa like the post.

Translation

ABUSE ABUSE ABUSE

Brothers, family and friends and all of our partners; As stakeholders in the Human rights fraternity, we have been sadenned by the song sung by our beloved friend Tonya known by the name of ” Agwelina ” which seeks to fight homosexuality.

We know that this is about the private life of an individual. We are saddened because this song only talks about one side of the coin – the bad about gays. Is it that gays have nothing good that can be sung about? ?


Please if you are a stakeholder, partner, friend, or brother protest this and join the campaign of not listening to this song or buying any music CDs by matonya.


Please help to spread this message and also ‘like’ the post.

Discussion 5: Peer Education through a Posting on Facebook (501 likes)

SHUHUDA USHUHUDA USHUHUDA USHUHUDA

Du jamani hivi vilainishi kumbe vinasaidia hata kuondoa mapele sehemu zangu za siri,tazama nilikuwa na rashezi katika sehemu ya mkundu nilijaribu kutumia dawa mbalimbali mara nilipoanza kutumia nimeshangaa vimeisha na ngozi ya mkunduni imekuwa nyororo hatari. Nadhani sasa tumepata mkombozi kwani sasa ufumbuzi umepatikana.

Jamani huo ulikuwa ushuhuda wa mdau wetu aliyekuwa Mkoani Morogoro aliyetumia Vilainishi na vikamsaidia.

Wewe unasubiri nini???? Kamata Kilainishi Twenzetu!!!

Translation

TESTIMONY TESTIMONY TESTIMONY TESTIMONY

Du! So lubricants can help to remove rashes in my private parts, I had rashes and  I tried using various medications I was surprised when I started using lubricants the rushes in the anus region are over and it has been very smooth. I think now we’ve found the solution for this.

That was the testimony from one of our member from the Morogoro region, for whom lubricants changed his life

Advocacy Tagline: What you waiting for???? Grab your lubricants my friends!!

Social media/capital

From the foregoing, there are a number of lessons TSSF have learnt over time and can share with our partners in the region. One is that social media is an effective social capital building tool and critical in addressing health service and human rights needs of the LGBT community in the region. Social capital here refers to the building of “networks with shared norms, values and understandings that facilitate co-operation within or among groups (World Bank, 2011).” Given the high social stigma, risk of violence and even rejection by family, most LGBT persons strive to reach out to each other anonymously. Increasingly, social media addresses this need, not just because people can join through the forums, using aliases or hidden identities, but also because of its ability to aggregate many more people together like them. This is especially important in increasing snowballing effect of health services linkages, increasing social capital among the MSM networks and increasing personal efficacy in their HIV prevention, treatment and care needs.

Furthermore, social media tools provide an opportunity to create a system of referrals to MSM-friendly and LGBT knowledgeable HIV service providers. The scarcity of such service providers is most notable in rural areas where essential services are geographically far, even for the general population. An online referral system is thus cost effective and an important way to ensure that LGBT persons who invest in traveling to these locations receive access to qualified services. To date social media has enabled TSSF to refer about 50 people from different parts of the country to HTC services, psycho-social support and supportive medical consultations.

The online forum provides people with space to be and affirm themselves. As one member described it, “It is our home.” As such, it becomes a space for individual and collective empowerment, where members do not have to pretend to be anyone other than themselves. Often, the online social forum becomes a stepping stone for LGBT members to gain the self-confidence and self-acceptance that then lead them to “come out” in real life.

Secondly, social media can proved a broader outreach opportunity for programs working with MSM. HIV and health programs that use “traditional” peer support programs could see a benefit in complementing with online peer outreach and support. Historically, peer support has included a person or persons meeting face-to-face in spaces where LGBT people meet and as referrals through LGBT social network gatekeepers. This method is still valid and should be used in addition to, and as a complement of, online outreach programs. The difference between the two methods, however, is timing.

The online program can respond and dispatch with instant information, collective and dynamic social support that responds to their particular needs, and references and referrals to where users can find in-stock HIV prevention supplies like condoms and lubricants. This instantaneous information exchange can happen anywhere the user normally access the Internet. Physical space peer support, as compared to the virtual/online space, requires planned meeting times or spaces, and appointments can be missed or spaces rendered unsafe.

Though the physical space peer educator can directly address the concerns and questions of a person they are with, the online space gives users the freedom to search for and ask questions and address concerns. This freedom of information has proven beneficial for TSSF member retention and maintaining levels of interest in the Bambucha Media program. Furthermore, the anonymity of social media enables a more accurate estimation of the magnitude a particular problem. It becomes possible to triangulate health problems that people typically keep secret and then reach out to them with information and even encouragement.

In the last few months Nigeria and Uganda have adopted extremely regressive anti-LGBTI rights legislations that further criminalize homosexual conduct and for the first time criminalizing promotion and the organizing of LGBTI rights groups. These regional policies are having an impact in Tanzania. There is a debate now in the Tanzanian parliament on further criminalizing “induce others to become gays or those who promote the behavior (Muga, 2014).”  Our response to this issue is still the same as when there is a hotly debated subject in public domain particularly the press.

TSSF experience has been that, pulling out from commenting on this or any other contentious issues generally lead to the debate dying down – in other words we do not “add fuel to the fire.” During situations such as these we would often pull out the social media campaigns, as well as boycott and urge our partners, friends and stakeholders in the Human rights fraternity to boycott News outlets that advance contentious issues – especially if they do so to increase hostility against the LGBT people.

Conclusion

TSSF’s experience shows that it is possible to engage a considerable number of target audiences through social media and other ICT tools. When working with criminalized and often socially stigmatized populations innovative outreach services can determine success or failure of a particular service or program. TSSF has been able to create, raise and promote community awareness on issues on HIV and other health services, human rights, good governance, stigma and discrimination, even in the context of a socially conservative culture.

Even when the social media engagement led to national debate and eventual withdrawal of TSSF’s registration certificate, their presence in social media still continued to serve its purpose of providing information and linkage to services. Indeed the very discussion online scaled up the reach of these tools since people who had not heard about TSSF and services, began to actively search for TSSF on the Internet.

Programs looking forward to working with the LGBT community under similar social context, particularly in many African countries can find in this approach an effect tool for outreach, peer education and community mobilization.

References

Beyrer, C. (2014). Strategies to manage the HIV epidemic in gay, bisexual, and other men who have sex with men. Current Opinion in Infectious Diseases, 27:1 – 8.

Bull, S. S. (2012). Social media–delivered sexual health intervention: a cluster randomized controlled trial. American Journal of Preventive Medicine, 3(5), 467-474.

Human Rights Watch. (2013). “Treat Us Like Human Beings” Discrimination against Sex Workers, Sexual and Gender Minorities, and People Who Use Drugs in Tanzania. New York: HRW.

Internet World Stats. (2012). Internet Usage Statistics for Africa. Retrieved March 27, 2014, from Internet World Stats: http://www.Internetworldstats.com/stats1.htm

Jaganath, D. G. (2012). Harnessing Online Peer Education (HOPE): integrating C-POL and social media to train peer leaders in HIV prevention. AIDS care, 24(5), 593-600.

Jernigan, C. &. (2009). Gaydar: Facebook friendships expose sexual orientation. First Mond@y, Vol 14, no. 10.

Leonardi, M. P. (2013). Enterprise Social Media: Definition, History, and Prospects for the Study of Social Technologies in Organizations. Journal of Computer-Mediated Communication, 1–19.

Mpekuzi. (2014, April 11). Shirika la Tanzania Sisi Kwa Sisi Foundation (TSSF) Lafutiwa Usajili kwa tuhuma ya kujihusisha na kuhamasisha ushoga Nchini. Retrieved from http://www.mpekuzihuru.com/2014/04/shirika-la-tanzania-sisi-kwa-sisi.html

Muga, E. (2014, March 29th). Dar plans to introduce tougher anti-gay Bill . Retrieved April 7, 2014, from http://www.theeastafrican.co.ke/news/Dar-plans-to-introduce-tougher-anti-gay-Bill–/-/2558/2262374/-/iq7xix/-/index.html

Mutuku, L. (2012, January 13). Mobile Technology in Tanzania. Retrieved March 27, 2014, from Mobile Technology in Tanzania: http://www.ihub.co.ke/blog/2012/01/mobile-technology-in-tanzania/

TACAIDS. (2013). Tanzania Third National Multi-sectoral Strategic Framework For HIV and AIDS (2013/14 – 2017/18). Dar es Salaam: Tanzania Commission For AIDS. Tanzania: Act No. 4 of 1998. (1998, July 1st). Sexual Offences Special Provisions Act, 1998. Retrieved April 1, 2014, from http://www.refworld.org/docid/3ae6b5098

World Bank. (2011). Social Capital. Retrieved from: http://go.worldbank.org/X17RX35L00

Young, S. D. (2012). Recommended guidelines on using social networking technologies for HIV prevention research. AIDS and Behavior, 1-3.

Biographical Statements

Collins M. Kahema is the Information and Communication officer at Tanzania Sisi Kwa Sisi Foundation. He is an actor and is in the main cast of DW Swahili’s radio series called Noa Bongo for the past three seasons. Collins dreams of better world of young lesbian, gay, bisexual, transgender, and sex workers are well informed and educated of various issues pertaining to their life through ICT.

John Kashiha is the Program Director of the Tanzania Sisi Kwa Sisi Foundation, a lesbian, gay, bisexual, transgender, intersex (LGBTI) and sex worker organization, based in Dar es Salaam. Kashiha is a young researcher, social worker, programmer, activist and human rights defender. His research and advocacy over the last six years has enabled him to gain experiences in LGBTI sexuality, human rights and health and HIV/AIDS programming. A graduate of Cooperative and Finance Management, Kashiha received a M.A. in Community Development in 2012.

David K. Mbote works with Futures Group; USAID funded Health Policy Project as policy and advocacy Advisor in Nairobi Kenya. He has over 10 years working in the field of HIV & Human rights advocacy in Africa. He holds an MBA from University of Nairobi and MSc in commerce (finance), from the KCA University.

Michael R. Mhando is a Capacity Building Officer at Tanzania Sisi Kwa Sisi Foundation. He is a Teacher and Accountants. He has been working on the Key Population Issues over three years here in Tanzania, He is the one who Initiate the program called Create a space for Young LGBT where by the learn and overcome the stigma and Discrimination through their talents and He is also initiated the program called Peer to Peer Support Group through the Social Media space. He has earned his BAC in 2010 at Tanzania Institute of Accountancy and has been a Secondary School Teacher for 4 years.

Works Cited

World Bank. (2011). Social Capital. Retrieved from web.worldbank.org : http://go.worldbank.org/X17RX35L00

Young, S. D. (2012). Recommended guidelines on using social networking technologies for HIV prevention research. AIDS and Behavior , 1 – 3.

Bull, S. S. (2012). Social media–delivered sexual health intervention: a cluster randomized controlled trial. American journal of preventive medicine , 3(5), 467-474.

Beyrer, C. (2014). Strategies to manage the HIV epidemic in gay, bisexual, and other men who have sex with men. Current Oppinion in Infectious Diseases , 27:1 – 8.

Internet World Stats. (2012). Internet Usage Statistics for Africa. Retrieved March 27, 2014, from Internet World Stats: http://www.internetworldstats.com/stats1.htm

Human Rights Watch. (2013). “Treat Us Like Human Beings” Discrimination against Sex Workers, Sexual and Gender Minorities, and People Who Use Drugs in Tanzania. New York: HRW.

Jaganath, D. G. (2012). Harnessing Online Peer Education (HOPE): integrating C-POL and social media to train peer leaders in HIV prevention. AIDS care , 24(5), 593-600.

Jaganath, D. H. ( 2012). Harnessing Online Peer Education (HOPE): Integrating C-POL and Social Media to Train Peer Leaders in HIV Prevention. AIDS Care , 24(5): 593–600. .

Jernigan, C. &. (2009). Gaydar: Facebook friendships expose sexual orientation. First Mond@y, vol 14, no. 10 .

Leonardi, M. P. (2013). Enterprise Social Media: Definition, History, and Prospects for the Study of Social Technologies in Organizations. Journal of Computer-Mediated Communication , 1–19.

Muga, E. (2014, March 29th). Dar plans to introduce tougher anti-gay Bill . Retrieved April 7, 2014, from http://www.theeastafrican.co.ke: http://www.theeastafrican.co.ke/news/Dar-plans-to-introduce-tougher-anti-gay-Bill–/-/2558/2262374/-/iq7xix/-/index.html

Mutuku, L. (2012, January 13). Mobile Technology in Tanzania. Retrieved March 27, 2014, from Mobile Technology in Tanzania: http://www.ihub.co.ke/blog/2012/01/mobile-technology-in-tanzania/

Mpekuzi. (2014, April 11). Shirika la Tanzania Sisi Kwa Sisi Foundation (TSSF) Lafutiwa Usajili kwa tuhuma ya kujihusisha na kuhamasisha ushoga Nchini. Retrieved from http://www.mpekuzihuru.com/: http://www.mpekuzihuru.com/2014/04/shirika-la-tanzania-sisi-kwa-sisi.html

Pfeiffer, C. A. ( 2014). The use of social media among adolescents in Dar es Salaam and Mtwara, Tanzania. Reproductive Health Matters, Volume 22, Issue 43 , Pages 178-186.

TACAIDS. (2013). Tanzania Third NationalL Multi-sectoral Strategic Framework For HIV and AIDS (2013/14 – 2017/18). Dar es Salaam: Tanzania Commission For AIDS.

Tanzania: Act No. 4 of 1998. (1998, July 1st). Sexual Offences Special Provisions Act, 1998. Retrieved April 1, 2014, from http://www.refworld.org/docid/3ae6b5098.html: http://www.refworld.org/docid/3ae6b5098.html

Jorge Rivas, Jennifer Wheeler, Marcos Rodas & Susan Lungo

Published Online: September 25, 2014
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Abstract

Most countries in Central America have HIV epidemics concentrated among men who have sex with men (MSM) and transgender women (TW), with prevalence in these populations ranging from 8% in Nicaragua to 26% in El Salvador. High levels of stigma and discrimination coupled with this heavy HIV burden create a major challenge for efforts to reach these populations and combat the epidemic. The Pan-American Social Marketing Organization (PASMO) developed a combination prevention intervention in Central America that delivers HIV prevention behavior change communication (BCC) messages, products, services, and referrals to promote improved condom and condom-compatible lubricant use, HIV testing, violence reporting and the use of complementary services. As part of this program, an online “cyber-educator” intervention for MSM, consisting of virtual one-on-one BCC and HIV counseling and testing referrals, was launched through existing chat-rooms and websites.  Participants were tracked using a confidential unique identifier code (UIC). In 2013, 7,219 MSM UICs were recorded. Created as a response to social media evolution, this intervention successfully illustrates how innovative HIV prevention education can reach populations most-at-risk for HIV.

Key Words: MSM, social media, peer educators, HIV, Central America

Introduction: HIV in Central America

The Central American region includes Belize, Guatemala, El Salvador, Honduras, Nicaragua, Costa Rica and Panamá. Approximately 380,000 people live with HIV in Central America, most of whom reside in El Salvador, Honduras, and Guatemala. Epidemiologic surveillance in the region suggests a concentrated epidemic in large urban areas, with prevalence among the general population ranging from 0.2% to 0.9%, with the exception of Belize, where HIV prevalence is 2.3% (UNAIDS, 2009). HIV prevalence is much higher among MSM (7.5% to 13% across the region) and TW 24% in Guatemala (Soto, R. et al, 2007) and 26% in El Salvador (Hernandez, F. Guardado, M. Paz-Bailey, G. 2010)— The only two countries that have collected prevalence data in this group.

Stigma and discrimination against sexual minorities is high in Central America. According to the public opinion study conducted by USAID/PASCA in El Salvador in 2011, 50% of the general population reported discriminatory attitudes towards high-risk groups, including MSM; 85.1% of respondents agreed that “people have the right to assault trans/transvestites for being who they are” and 72.4% disagreed that “transgender/transvestites have the right to have legal documents that identify them as women.” HIV/AIDS-related stigma is also high, and there is widespread belief that people who are infected deserved their illness because of a wrongdoing usually linked to sex or illegal or socially disapproved behaviors. The same USAID/PASCA study cited above found 38.1% of respondents believed “female sex workers with HIV or AIDS deserve it for their bad behavior.” Another study conducted in El Salvador about Internalized Homonegativity (IH) in 2012 reveals that higher levels of IH shown to be a factor for higher risk behaviors and postponement of health care treatment and adherence (Andrinopoulos K, Hembling J. 2014).

A recent study conducted with 3,748 MSM globally found that perceptions of homophobia within the respondent’s country functioned as a consistent barrier to accessing HIV products and services. Higher levels of homophobia were significantly associated with lower odds of access to condoms, lubricants, HIV testing, and HIV treatment. Similarly, MSM who reported that they would feel comfortable discussing HIV with a health provider were significantly more likely to report access and use of products and services (Ayala G. et al, 2013). Discrimination and stigma towards MSM by health care providers may also result in reluctance to access care, reluctance to disclose sexual behavior or clinical symptoms of STI, negligence or substandard care on the part of the provider, or even refusal of service. (Chakrapani V. et al, 2007)

Homophobia and HIV stigma in Central America result in challenges reaching MSM with HIV prevention, treatment, and care, particularly those who are most socially vulnerable and thus most at risk. HIV prevention, treatment and care programs in the region must confront two key challenges: reaching a population that does not want to be identified and the overly close identification of HIV with sexual minorities, which may trigger further stigmatization, as well as rejection by lesbian, gay, bisexual, transgender groups and communities who strive to downplay the role of HIV in sexual minority politics (Dibble, S. Roberts, S. Nussey, B. 2004). According to the UNAIDS 2013 Global report, the percentage of MSM reached by HIV prevention programs in Latin America remained unchanged, at 51%, between 2009 and 2012. The median condom use at last anal sex in 43 countries also remained unchanged at 57% over the same time period. This stagnation may be due in part to the social inequalities and traditional norms that reinforce stigma towards high-risk groups and in turn interfere with the effectiveness of HIV prevention programs (De Boni, R., Veloso, V., & Grinsztejn, B. 2014).

There is a need to identify better strategies to serve hard-to-reach MSM, including those who are isolated, who do not identify as gay, and who are married, with adequate, sensitive HIV prevention, treatment, and care programs. A new and promising mechanism for reaching these groups is offered by the Internet. This technology is both already used by men who seek sex with other men in many countries in the world, and is also already being adopted as a space where health-related information and referral services can be offered confidentially and securely (Caceres, C. Aggleton, P. & Galea J. 2008).

The PASMO program

The Pan-American Social Marketing Organization (PASMO), with regional headquarters in Guatemala, has the mission of improving the availability, access and use of information, products and key health services, through its social marketing techniques, aiming to significantly contribute to the development of an enabling environment that facilitates good health and a better quality of life for vulnerable people in Central America. PASMO, an affiliate of Population Services International (PSI), began operating in 1997 and has expanded its presence to all countries in Central America, with a local infrastructure in each of the seven countries. In 2010, PASMO and its partners began implementing the USAID-funded Combination Prevention for HIV in Central America and Mexico, with the objective of helping individuals make positive behavior changes and access HIV prevention products and health services by providing a minimum package consisting of behavior change communication (BCC) activities, biomedical interventions, and structural approaches.

The BCC activities are aimed to promote healthy behaviors and must involve a sequence based on the monitoring of prevention work. Traditionally these activities have included a series of methodologies that allow the target populations to interact with the educator and make the intervention more appealing and different. This component would not be complete if you do not have accessibility and availability of products to promote behavior in this case condoms and water based lubricants. All educators must verify the availability of these products on site and/or nearby places so as to ensure that people can find them when needed.

The core component of combination prevention, named the biomedical, comprises all those actions of a medical nature – supporting clinical prevention efforts on HIV, such as STI screening, treatment, testing, detection of viral load, etc.  This component must ensure that each share of combination prevention, people: a) constantly have access to sexual health checks (prophylaxis). B) In case of infections, carry out the treatment prescribed in doses and timing, following the doctor’s instructions. C)  When taking a voluntary HIV test, provide the pre and post counseling. All referrals for this component are made through numbered vouchers that allow the program to count these types of interventions.

The complementary or structural component are the services and/or products that complement the actions called “Combination Prevention”, this is a series of products and/or services based on the specific needs of each population, actions to be considered at this level are: a) referral to support groups (stigma and discrimination, legal support, violence, etc., self-acceptance, nutrition programs (PVS) virtual etc.) b) Reference to Care centers for decreasing behavior related to alcohol/drugs.

Closing the Combination Prevention Cycle

By PASMO’s definition, closing the combination prevention cycle includes ensuring that individuals are exposed to three BCC interventions, one services intervention (either HIV counseling and testing or STI screening and treatment) and one complimentary service referral.

A new intervention

Given the high levels of stigma, discrimination and violence in Central America, new technologies, such as computer-delivered interventions, could be an important means for reaching subgroups of MSM, such as those who are non-gay identified. or who may not feel safe through face-to-face interactions from gay or bisexual peers (Sullivan, P. et al. 2012). Some examples of interventions including educational websites and other more interactive theory-based interventions are shown by Rietmeijer & McFarlane 2009, which translate traditional behavioral interventions to an online format, such as computer-based counseling models or chat-room interventions. These recent advances in interactive and participatory Internet technologies (termed Web 2.0) have transformed the pattern of communication, including health-related communications (Eysenbach, G. 2008). Health communications programs have put forth efforts into identifying new opportunities for using social media to impact population health (Thackeray et al. 2008; CDC, 2014; Norman, McIntosh & Eysenbach, 2008; Vance, Howe, & Dellavalle, 2009). While the implementation benefits of these online interventions, including the ability to target multiple sites from a central operating location and the ability to use real-time data to target the busiest sites for improved reach are clear, (Caceres, C. Aggleton, P. & Galea J.) evidence about the effectiveness of these new interventions in achieving behavior change is emerging.  Some studies have shown that well-conceived, theory-based interventions can achieve short-term changes in proximal determinants of behavior change (such as knowledge, self-efficacy, and motivation) and also on some key sexual risk behaviors, such as condom use during anal sex (Bowen et al. 2008; Carpenter et al., 2010).

As shown by Jones & Fox 2009, the use of social media has grown significantly in Central America over the past decade. Participation in social networking sites more than quadrupled between 2005 & 2009. In order to reach MSM, particularly hidden or non-disclosed MSM, in 2011 PASMO launched and currently implements an online outreach “cyber-educator” initiative that adapts face-to-face outreach to online and social media channels as part of the USAID Combination Prevention Program. The intervention is specifically designed to target young MSM, bisexual men and MSM who do not self-identify as “gay” in all program countries—those who were not being served by other outreach activities that are traditionally implemented in high-risk zones and other physical spaces.

The intervention consists of peer cyber-educators using chat functions to engage MSM in conversations about HIV prevention and initiate BCC activities. Framed in the stages of change model (Figure 1), cyber-educators use information divulged during the conversation to identify where in the behavior change process a user could be with regards to a specific and desired HIV prevention behavior. The BCC engagement is intended to motivate the user to advance to a stage closer to the desired healthy behavior.

rivas1

Figure 1: The Stages of Change Continuum (DiClemente and Prochaska, 1998)

When MSM disclose HIV risk behavior, cyber-educators also provide online referral vouchers for HIV testing and counseling services in clinics where staff are trained and sensitized to provide services to the MSM/TW population. The online voucher system allows users to download vouchers that can be redeemed at partner institutions for biomedical services that are free of charge or provided at discounted prices. An emergent window also offers the user a list of all clinics available in each city. To download the voucher, a link prompts the user to enter data to create a unique identifier code (UIC) and print the online voucher. The UIC is used to track individuals throughout all the program’s intervention components and allows the program to identify individuals reached with each type of intervention (behavioral, biomedical or structural).

Peer outreach workers were recruited and trained as “cyber-educators” to deliver the intervention. The outreach workers were trained in the use and management of online tools and social media for the purposes of behavior change communication. In each country, local teams conducted a formative assessment to identify the most popular websites, chat rooms and social networking sites used by the target population and their patterns of use, including the times of day or night when they were most frequently online. In all countries, the most popular mechanism through which to conduct the online outreach is Facebook. Other country-specific sites like gayguatemala.com are also used.

Given the vast amount of information available on the Internet, cyber-educators must be well versed and prepared to discuss subject matter that is of educational importance and interest to MSM and TW. In addition to the online outreach activities, PASMO developed informational websites that are tailored to the program’s target groups and cover specific topics, such as stigma and discrimination, HIV information, and masculinity (Table 1). The online outreach activities and websites are integrated in that the websites serve as a resource for cyber-educators and as a place to refer users to further HIV prevention information. Constant communication between the cyber-educators and the Webmaster at the regional PASMO office keeps the material on the websites current and responsive to input from the online outreach activities.

Screen Shot 2014-09-27 at 09.44.05

Description of the websites created by PASMO

Monitoring activities is keen when tracking the success of the Combination Prevention Program. A series of procedures and tools are constantly implemented to track the reach of all activities across the region:

  1. a. SAM

SAM is the Activities Monitoring System, which allows the program to enter, store, analyze and generate reports related to all Combination Prevention components; Interpersonal Communication Activities (IPC), Biomedical and Structural. Each site in the region enters their activities, biomedical vouchers and trainings. Monthly, information is exported and sent to the Regional Office, where is consolidated into a central database. In addition, adjustments to overall system configuration, including settings in the various lists interface databases are established and managed from the Regional Office.

  1. b. The Cyber educators portal (www.cibereducadores.com)

Recently launched, this website was created as a complement to the monitoring system and a resource for the difficult labor of tracking online interventions. The website has three main functions: a) Serve as a data-entry source for cyber-educators. b) Transfer information of all online outreach activities to the MIS (SAM). c) Generate unique links to be sent to the users which allow to track the interaction of the user with the link sent and determine if the person opened the link, accessed the website, the frequency of access, and if they downloaded the biomedical voucher for the test or not.

Findings

The cyber-education intervention results

The online outreach activities are now implemented as a mechanism for delivery of BCC through the Combination Prevention Program in all of the Program countries. Using UIC, individuals were tracked through the program interventions and across the services offered by implementing partners. Based on the MIS records as shown in Table 2, during 2013, PASMO was able to reach 7,219 individuals through online peer education activities across Central America. The Program in Nicaragua not only reached, but also doubled its initial target of 1,300, providing online outreach interventions to 2,647 individuals. A total of 2,515 referrals for HIV testing services were provided in 2013 (both online and through face to face interventions) and 145 individuals reached with online activities were counseled and tested for HIV at partner clinics that were trained by PASMO to provide services to MSM.

Table 2: Regional PASMO Combination Prevention interventions January to December 2013

Screen Shot 2014-09-27 at 09.44.46

During the same calendar year, 836 individuals completed a minimum of one BCC intervention, one biomedical intervention and one complementary referral, and 126 (15%) of those 836 closing the cycle did so by participating in at least one online outreach.

The online format of the cyber-educator intervention facilitates the collection of monitoring data that includes: unique identifier code (UIC), type of message delivered, population; and can be used to provide rapid feedback to the program, making the program flexible and responsive. New monitoring data fields can be tracked to assess the implementation of activities. For example, in Costa Rica an increase in duration of online activities from 10 to 20 minutes (on average) demonstrates greater engagement and exposure to the BCC intervention.

The quality and consistency of implementation, however, is difficult to monitor and requires extensive support and supervision. PASMO uses three mechanisms for quality control: 1) reviewing past chat conversations to ensure quality of the intervention; 2) supervising the delivery of the intervention during implementation, and 3) reviewing activity reports provided by the cyber-educators.

The interactive nature of social media also allows users to provide instantaneous feedback and facilitates follow up, both on the cyber-educator and on the user side. Throughout the course of implementation, many users have returned to the webpages to share their HIV test results after having received a referral and to obtain follow-up and support. In Panama, in-person follow-up was provided by cyber-educators to users initially reached online. This follow up consisted of accompanying users to receive counseling and testing, facilitating the use of the referral voucher, and ensuring that they felt safe and confident during the HIV testing process.

No quantifiable information exists about the impact of the cyber-educators component in the change of HIV risky behaviors of the MSM in the region. As part of the evaluation of the Combination Prevention program, PASMO will conduct a quantitative study in 2015 to gather information from a representative sample of the target population. The data collected from this study will allow the program to measure health behaviors, and knowledge and use of health products in the target population over time. From this study programmers will be able to measure effectiveness of the different components of the program including the exposure to the cyber-educators component.

The websites interaction

Traffic on the program websites is high and the number of hits and likes for the webpages has grown significantly:

  • The ”Generación Cero” Facebook fan page (focused on reducing stigma and discrimination) grew from 530 fans (persons who liked the fan-page) in 2012 to 14,059 in 2013, an increase of 13,529 new fans during the last year.  By the end of 2013, the fan page had 177 twitter followers and 60 tweets.
  • The “Y ahora que?” webpage had a total of 7,570 visitors by September 2013—60% of whom were new visitors. This web site also has a fan page on Facebook, which earned a total of 3,457 likes in 2012 and 4,395 in 2013. In 2013 it had 938 new fans, 285 posts and 338 twitter followers.
  • “Mi zona H” webpage had a total of 7,626 visitors in 2013, 74% of whom were new visitors. The success of this web page on the Facebook fan page in the last year is tangible, increasing from 7,667 fans in 2012 to 30,720 in 2013, which indicates in the most recent year, the webpage earned 23,053 new fans—and increase of over 300 percent. Mi zona H had also 80 twitter followers and 172 posts.

Discussion

Reaching hidden populations with HIV programs has been challenging due to various social and political barriers in Central America. HIV programs in the region have worked hard to overcome these barriers. This article describes a pilot program that explored whether advances in social media could be used as an alternative or a complement to traditional health communication channels in Central America. PASMO has found that using virtual chat and web-based approaches for HIV BCC interventions successfully reached a different cohort of MSM population, mostly young MSM, as evidenced by UIC emerging from the online program that are not previously registered through other interventions (Table 3). Some of those reached online also went on to receive other program interventions, including counseling and testing services.

Table 3: Age ranges of MSM exposed to online activities in 2013, by country.

Age range

Country

Total

Guatemala

Costa Rica

El Salvador

Nicaragua

Panama

20 years old or younger

18.1%

14.4%

26.7%

21.7%

26.7%

20.9%

21 – 24

29.0%

26.0%

31.9%

28.4%

27.0%

28.2%

25 – 30

29.4%

26.1%

23.8%

33.0%

24.3%

29.2%

31 – 35

14.4%

13.2%

11.5%

9.9%

10.0%

11.7%

36 – 40

5.2%

9.6%

3.1%

4.0%

7.1%

5.4%

41 years old or older

4.0%

10.7%

2.9%

3.0%

4.9%

4.5%

From 2011 to 2013 more than 10,000 individual MSM were reached through online activities, which represents nearly one-third (31%) of the total population of MSM and TW reached by PASMO with prevention services in Central America. Using the Facebook interactive platform as a resource has made possible to have more than 30,000 persons aware of at least one of the resources available online, according to the fans reported. The use of online activities for the Combination Prevention Program is growing—in Nicaragua, PASMO is no longer implementing BCC activities directly, and now exclusively implements interventions through training and supervision of subcontracted NGOs, making the implementation of online approaches a key component of the overall intervention in that country.

Traffic on the various program websites has also grown significantly; in some cases even more than 10 times from one year to the next. Having thousands of new visitors and “fans” represents an important opportunity to continue delivering messages to a growing audience and maximizing the instant access to information that the internet provides. As an educational program, being present in the popular sites and resources, not only gives the program more exposure but also relevance and credibility, since most of internet users are constantly looking for trends and popularity.

Online interventions have the potential to greatly contribute to HIV prevention programs in the region because they can reach a different demographic within the target group, or serve as an entry point to other interventions, such as counseling and testing.  Several projects in Central America deliver HIV prevention activities through face-to-face approaches or interpersonal educational interventions. Online interventions are a new tool and, if expanded, properly implemented, and integrated into a program that allows for follow up support and services, can improve access, coverage and plausibly improve the effectiveness of combination prevention programs for HIV prevention, treatment and care. The online approaches used by the Combination Prevention Program in Central America are designed so that any organization inside or outside the region can use the materials and tools as references.

The cyber educators program has been able to reach a different cohort of MSM from those reached with face to face interventions; however it is important to understand that other populations in the region have high HIV prevalence. There is no substantial evidence that this program can be replicated with transgender women or female sex workers, and if that were necessary, it represents another series of limitations and challenges that need to be addressed.

Conclusion

As technology and social media continue to develop, new communication technologies represent an opportunity that cannot be ignored. PASMO’s experience with cyber-educators in Central America has been successful in targeting and reaching MSM with key HIV BCC and referral services. Although a new intervention, web-based communication now makes up a third of PASMO’s BCC interventions through the Combination Prevention program, with traffic on websites including more than 12,000 new visitors only in 2013.

Because the Internet is a global tool with increasing coverage, it ensures that this strategy can be replicated in almost any country where the Internet is accessible to a large segment of the population. Using this strategy also becomes important when target populations are difficult to reach through traditional methods, such as interpersonal communication programs. The use of online media provides the opportunity to instantly link the individuals to different sources of information which are not easily replicated in person.

After three years of implementation, some important lessons and limitations in the implementation of web-based communication programs are:

  • Some other populations with high HIV prevalence in the region, such as Female Sex Workers and Trangender women, represent a challenge for this approach. The cyber-education approach is primarily designed from the MSM perspective, which may be irrelevant to these groups.
  • Both FSW and TGW have lower SES and educational attainment than MSM, two factors that are significantly associated with internet access within the region, thus limiting the effectiveness of cyber-educators as a viable intervention.
  • Tracking the virtual vouchers is a challenge in some clinics, particularly when they have not been trained properly. In some clinics biomedical interventions were recorded with no differentiation between personal and virtual referrals because of lack of training.
  • There is no scientific evidence about the impact of this program on changing HIV risk behaviors, however, a new study will be conducted in 2015 aiming to respond to these premise.
  • Cyber-educators need to be trained intensively on the communication process and be mentored for a substantial period after that. Online conversations can be difficult to redirect and manage and the skills necessary to ensure proper implementation of the intervention are not easily learned. Refresher trainings are important to keep cyber-educators updated on health information and new approaches.
  • Continuously monitoring the program is crucial in order to keep content updated and relevant. Monitoring popular trends among the target group allows the program staff to make adjustments immediately, before losing users’ interest.
  • Online approaches have the potential to grow rapidly. It is challenging to adequately and continuously monitor the quality of the educational interventions and ensure rapid and efficient responses when required.
  • More evaluation activities are needed to determine the effectiveness of these approaches and their impact on motivating users to seek HIV counseling and testing and other services.

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Biographical Statements

Jorge Rivas: Senior Quantitative Researcher for the Pan American Social Marketing Organization. With a marketing degree, he provides technical support and builds research capacity in study design, analysis and interpretation of results for new strategies.

Jennifer Wheeler: PSI’s Regional Researcher for Latin America/Caribbean. She manages and provides technical assistance to the region’s research portfolio, including formative and evaluation studies in the areas of HIV/AIDS, FP, and gender violence. Dr. Wheeler has a PhD and MPH in International Health and Development from Tulane University.

Marcos Rodas: Social Media Specialist for the PASMO regional office. He is responsible for the Cyber-educators program, social networks and websites of the projects, developing communication strategies for behavior change communication and strategies to generate traffic on the websites.

Susana Lungo: PASMO deputy Director and COP of the USAID Combination Prevention Program. She has specialized expertise in brand management, new product positioning and communication, consumer research and evaluation.  Ms. Lungo has also extensive experience in Social Marketing, Behavior Change Communication and knowledge in HIV/ AIDS and STI prevention methods.


[1] Belize program was starting the online interventions program in 2013.

[2] Numbers reflect the quantity of individuals that received this type of intervention, based on the UIC.

Yves Calmette

Published Online: September 25, 2014
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Abstract

ACON is Australia’s largest LGBTI health organisation with a primary focus on the prevention of HIV and other sexually transmitted infections (STIs), as well as health promotion with gay men and other men who have sex with men (MSM). This is the group most affected by HIV in New South Wales (NSW), making up around 80% of all new infections annually (NSW Health, 2013). ACON is a community-based organisation, running a number of programs tailored to gay men’s sexual subcultures, practices, ethnicities and ages. In February 2013, ACON launched Ending HIV, the first large-scale campaign designed to meet the new targets set out in the NSW HIV Strategy 2012-15: A New Era (NSW Health, 2011). This strategy set the ambitious targets of reducing the transmission of HIV between gay and other homosexually active men in NSW by 60% by 2015, and 80% by 2020. Ending HIV was designed to mobilise the gay community to reach these targets. Ending HIV is an interactive social marketing campaign based on peer-education principles that incorporates communication, campaign and community mobilistaion initiatives to reach this goal. Ending HIV has been rolled out nationally and has received a high level of international attention, including winning the 2013 and 2014 Sydney Design Award, Australian Creative Best of the Best, Communication Arts Award of Excellence and the 2014 Graphis Annual Design Award. This article explores the genesis of ACON’s innovative engagement platform, which now drives all of ACON’s HIV and STI prevention work, and discusses the approach’s growing promise for prevention for diverse contexts.

Keywords: HIV, Ending HIV, Social Media (etc…)

Ending HIV: Introduction and Background

2020: Ending the decade, ending HIV. Imagine that.

yves1

In 2013, the NSW Health Minister Jillian Skinner, launched ACON’s innovative education initiative designed to help end the HIV epidemic by 2020. ACON’s Ending HIV campaign was launched at the start of the 35th annual Sydney Mardi Gras festival. This multiplatform campaign was targeted at gay men to educate them about the real possibility that HIV transmission in NSW could be virtually eliminated by 2020. This article outlines the steps that led to ACON’s ground-breaking initiative and its development through the first three phases of implementation to date. These phases included the launch (phase 1) to educate on the possibility of ending the epidemic by 2020. This was followed by a focus on the importance of maintaining the strong culture of safe sex in NSW (phase 2). Finally the campaign focused on testing (phase 3). The 4th phase honing on early treatment will be launched next year.

Ending HIV is possible

In 2011, Australia became a signatory to the United Nations Political Declaration on HIV/AIDS (UNAIDS, 2011). This significant international agreement was endorsed by all UN member states. Given Australia’s leadership role negotiating the Declaration and also Australia’s role as host of the International AIDS Society conference (AIDS2014), it was considered that there would be considerable international interest in Australia’s efforts and progress towards achieving the UN Political Declaration goals (Australian Federation of AIDS Organisations (AFAO), 2012).

The global targets set in the declaration include reducing sexual transmission of HIV by 50%, reducing HIV transmissions through injecting drug use by 50% and eliminating mother to child HIV transmissions by 2015. The Declaration also sets a target of having 15 million people living with HIV in low and middle-income countries on antiretroviral treatment (ARVs) by 2015. Promising emerging research findings (Matassa, M, 2011; Anderson, PL et al, 2013), together with the commitment encompassed in the Declaration, offer nothing less than the possibility of bringing the HIV epidemic to an end.

Australia, the NSW government endorsed this approach and the NSW HIV Strategy 2012-15: A New Era was launched on 1st December 2012. In line with this strategy ACON has committed to work towards reducing new HIV transmissions between gay and other homosexually active men by 80% by 2020.

New biomedical approaches such as Truvada used as post-exposure prophylaxis (PEP) and Pre-Exposure prophylaxis (PrEP) have been called a lot of different things by HIV experts. It has variously been called ‘Combination Prevention’, the ‘Prevention Revolution’, the ‘New Prevention Paradigm’, ‘Treatment as Prevention’ or even ‘Treatment for Prevention.’ Whatever it is that we choose to call it, it is about one thing – Ending HIV.

We are entering into the third and possibly final, phase in the history of HIV/AIDS in NSW. In the first phase in the 1980s, many gay men took up and promoted safe sex practices to protect themselves and their partners from the threat of the virus. Thing changed in the second phase in the 1990s, with the introduction of combination therapy, HIV stopped being a death sentence and became a manageable chronic condition. There was new hope for people living with HIV and HIV stopped being a death sentence. Understandably, condom use declined after this period as HIV became less of a visible threat to gay men. Now, for the first time, we know that treatments can be as effective (if not more so) than condoms. Everything has changed, as we enter into this 3rd phase of the epidemic. Finally we are able to look forward to a day where we can end HIV transmissions.

However, as for any revolutionary change, challenges, barriers and obstacles can potentially stop ACON and communities of gay men and other men who have sex with men from meeting the challenge of Ending HIV. This HIV-prevention approach is very ambitious and different from the simplicity of messages around condom-reinforcement. This complex set of messages differs from previous campaigns in several key ways:

-       It is not about a decrease in HIV notifications, but the elimination of HIV transmission for good.

-       It is not only about condoms, but about building community awareness of other risk reduction methods such as treatment as prevention, the effects of having an undetectable viral load (UDVL) and PEP and PrEP as prevention methods.

-       It is about mobilising key populations, educating them and encouraging them to embrace a vision of a world without HIV – then take steps to make this a reality.

-       It is about radically changing behaviours within a few years – creating a massive upscale in testing frequency and early treatment uptake while maintaining a strong safe sex culture.

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Image1: ‘by 2015, we will reduce the transmission of HIV among gay and other homosexually active men by 60% and by 80% by 2020.’ (NSW Health, 2013).

Ending HIV has a number of ambitious objectives, leading towards these goals.

-       to inform gay men about recent research findings, new prevention approaches and technologies that make ending HIV transmissions attainable.

-       to update gay men’s knowledge about significant advances in HIV treatment, resulting in simpler regimens, far fewer side effects and much greater health and prevention efficacy benefit.

-       to encourage all sexually active gay men to test for HIV more frequently.

-       to support and encourage gay men to sustain safe behaviours sufficient to ensure the goals are attained.

-       to ensure that gay men diagnosed with HIV are able to access treatment and care as soon as possible.

-       to achieve a dramatic decline in community viral load sufficient to attain the overall reduction in transmission goal.

-       to refresh and reposition the role of condoms as the safest and most assured means of preventing HIV transmission, among a ‘toolbox’ of prevention strategies.

-       to reinforce the importance of regular HIV/STI testing for all gay men.

-       to update knowledge and awareness about the prevention benefits from maintaining an UDVL, sustained over time.

ACON is well-positioned to meet these challenges. As a community based organisation it is run by members of the community most affected by HIV. This peer-led approach ensures that messaging can be tailored to subcultures within the broader population of gay men. By adapting campaign messaging to target these groups, messages become more personally meaningful and help to encourage behaviour change (Spina, 2013).

The populations of gay men we work with are diverse. Certain individuals may find these discussions uncomfortable, others will be sceptical and some will be already convinced. Research into attitudes towards these new approaches among HIV positive and negative gay men in Australia (Holt et al., 2013) revealed very high levels of disbelief about the prevention benefit of treatment.

‘HIV-negative men more strongly disagreed that HIV-positive people on treatments are unlikely to transmit HIV and that a person with an undetectable viral load cannot pass on HIV’ (page 6).

This indicates that education around these new approaches is needed to ensure that most gay men are aware of the effectiveness of these new approaches. The research must be translated so that these individuals know what they can do to help end the HIV epidemic.

Creative collaborations for designing the new prevention landscape

Ending HIV is a complex set of messages. There are key conditions that will need to be met to ‘end’ new HIV transmissions by 2020. It requires all stakeholders from non-governmental organisations (NGOs), government departments, clinicians to community members to work together in close partnership. The one-size-fits-all approach to HIV prevention, support and care will not work. Core messages had to be designed to speak to gay men collectively, convincing them of the possibility of ending HIV by 2020. This involved active participation by affected communities, both LGBTI and heterosexual.

In addition to the broader messaging of Ending HIV, customised messages were also disseminated to provide sub-culturally tailored information. This involved targeting the campaign in culturally appropriate ways to specific sub populations. The Ending HIV website contains different ‘entry portals’ directing a website visitor to tailored information that are designed to meet their needs. These portals are ‘Young’ (under 29), ‘Sexually Adventurous’, ‘HIV +’, ‘HIV –‘ and ‘In a Relationship.’ The messaging through these portals uses language aimed at engaging that specific population, as well as information specific to that group. Specific information that needs to be communicated differently includes recommended frequency of testing and treatment options.

Finally barriers to achieving the stated goals needed to be addressed. These are both structural and based on addressing the perceptions of gay men. Structural barriers continue to be addressed through strong partnerships with government, clinicians and regulatory bodies, with advances made in the ease of access to treatment as well as the scale up of rapid testing centres and the introduction of home testing. Looking to the future other barriers such as access to PrEP and the use of rectal microbicides are yet to be introduced. Other barriers including stigma and discrimination towards LGBTI people and especially those living with HIV, must also continue to be challenged through the campaigns being run.

ACON’s Ending HIV Strategic Approach

The Ending HIV approach required a radical rethinking of how we did HIV prevention work. This required major organisational change as well as challenging the beliefs of HIV ‘experts’ about what is effective HIV prevention. Both anecdotally and through qualitative research studies (Prestage, et al., 2010) on the perceptions of gay men and other men who have sex with men. ACON was receiving feedback that its campaigns were boring or that they did not relate to the condom-reinforcement messaging and that it did not speak to their sexual practices and needs. It is difficult to galvanise community mobilisation if the communities being served do notfeel sufficient ownership or engagement with campaign messages. The Pleasure and Sexual Health (PASH) study (Prestage G et al, 2009) showed that while most men were generally appreciative of HIV prevention messages and supported their continuation, there were also many criticisms. These criticisms ranged from feeling that the messages were not hard-hitting enough and failed to show HIV as a sufficient threat. Still others believed the messages were out of proportion to the real level of HIV threat and were designed to make gay men afraid of having sex. Even though HIV still matters to most gay men, they do not tend to personally engage with the details of HIV prevention messaging and campaigns. Also, they often don’t pay particular attention to those messages. The majority of respondents also suggested that there was little to distinguish campaigns from one another, that they all look much the same. Some respondents indicated they had simply switched off from HIV education messages as this quote from a 33 year old, HIV-negative, PASH study participant exemplifies:

All that talk about “condoms not being a nuisance” or even “being part of the fun” is simply a lie so don’t keep telling us this BS – no wonder no one reads it.’

Business-as-usual approaches, even if they are best practice, are no longer enough. To re-engage gay men HIV prevention, education and care organizations must use new approaches.

How to End HIV

HIV notifications have remained relatively stable in NSW over the past ten years (NSW Health, 2013) but Ending HIV is about eliminating new HIV transmissions, not accepting stability as the status quo. This dedication required ACON to innovate and move away from using the traditional social marketing framework. In order to position Ending HIV as an achievable goal ACON had to rethink the ways that it communicates and engages with gay men.

This required much more than a standard campaign. ACON developed an entire community engagement platform that sought to achieve a massive impact in reaching and engaging the majority of gay men in NSW. It was also designed so that it was not a static campaign, but rather had the flexibility to grow and evolve along with the community it engages. It has been released through various phases released over multiple years to keep the messages fresh and relevant. The social media presence allowed resources from partners and key stakeholders to be shared with our audience. Through being adaptable, innovative, interactive and responsive the campaign ensured an ongoing dialogue with community members could be maintained.

The five pillars of Ending HIV: Impact, Reach, relevance, Dialogue and Ownership.

Impact

ACON had to think ‘outside the box’ to demonstrate that everything had changed.

New messages needed to be communicated in terms of HIV testing frequency, the health benefits of new treatments, treatments impacts on transmission and other HIV risk reduction strategies. ACON’s creative development process was driven by:

-       Looking at creative inspirations from sources beyond the traditional gay imagery and the ‘sex sells’ formula commonly (over)used in the HIV sector.

-       Developing a holistic concept to perfectly fit all communications channels including; print, digital, video, social and ambient.

-       Designing a communication platform with the potential to be used as a brand for multiple years and multiple campaign iterations.

-       Leveraging the same guidelines for optimum activation around multiple sets of executions.

It all started as a provocative promise, which became our new HIV prevention brand. Ending HIV (by 2020) came to life with a very simple yet effective visual mnemonic:

[TEST MORE] + [TREAT EALY] + [STAY SAFE] = [ENDING HIV].

Ending HIV embodies a movement, a vision, a target and a new journey. ACON would like gay men to go on that journey with them. The campaign speaks to all gay men, whether HIV positive or negative. Ending HIV is an inclusive movement that everyone affected by HIV can be a part of.

While the ‘2020’ target isn’t part of the core message, it is referred to throughout the channels that support the campaign such as the web portals, videos and relevant print material. The equation visually explores the link between testing, early treatment, risk reduction and ending HIV.

While the messages are complex, the simple visual mnemonic ensures all gay men and other men who have sex with men understand the components that are needed to make this goal a reality.

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The Ending HIV design is a bold, simple black and white font-based approach. There is no need for colours, visuals or images of hot, half-naked men. ACON believes the message is strong enough to stand by itself without the addition of ‘cosmetic’ effects. It gives the campaign a very specific and unique edge to help it stand out against the thousands of messages people are exposed to daily. Colour was added during phase 3 of the rollout, to draw attention to the new messages. The ‘Stay Safe’ messaging of the condom reinforcement aspect of the campaign and the ‘Test More’ messaging to encourage people into rapid testing services. This gave each new phase an original, contemporary look while leveraging the strength of the original design.

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The different phases of the campaign examine the elements of the main equation. Communicating that it is possible to end HIV if we test more often, treat early and continue to play safe. The design allows for different levels of complexity in the messaging, adapted to the channels where the messages are run. This ranges from the equation alone for quick messaging, to in-depth information through media articles and websites. The website address (endinghiv.org.au) is very prominent and directs the viewer to further information.

Since its inception in February 2013, 5 different executions have been developed.

Phase 1 – Ending HIV and I’m IN executions, promoting community education and buy-in.

Phase 2 – Carry On series focusing on safe sex practices.

Phase 3 – Easy As and Know Now focusing on promoting HIV testing services.

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18 months after the initial launch campaign evaluations have shown that the Ending HIV brand and design earned a very strong currency with the gay community, with each phase building upon the last and strengthening recall, reach and engagement (Spina, 2013).

Reach

The campaign is asking gay men to radically change their behaviours. In order to cut through the noise it had to be big, loud and visible everywhere. It needed to leverage what works best to hit hard and engage as many gay men as possible, as quickly as possible.

The team at ACON knew that changes in the gay community meant that relying on the gay press, posters in sex on premises venues (SOPVs) and the traditional gay bars was no longer sufficient. Spina’s evaluation reports (2010a, 2010b) show that relatively low readership of the gay press and declining numbers of gay men going to gay venues means that a four week print-only campaign would likely miss up to half the target audience, with only a third of the target audience having multiple exposures to the campaign. ACON worked with Universal Media, one of the leading global media planning agencies, who offered to collaborate on a pro-bono basis. Their expertise combined with efficient media planning tools helped develop a solid mix of outdoor, online and mobile advertising formulated to optimally target the gay community.

Mainstream outdoor media was used to maximize impact and reach. Large format billboards on street furniture and bus shelters where gay men live, work and play were prime sites for campaign messages . The total reach was expected to be 50% of all men (gay and heterosexual) in Sydney aged 18 to 55 at a frequency of 4 to 5 exposures. These figures ended up being much higher for our target audience, as the gay population was over-represented in the selected areas.

Digital approaches were key to increasing reach and generating further engagement. This approach increased the frequency of messaging and added to the impact generated  by the outdoor advertising. High impact digital executions targeted to gay sites such as Samesame, Manhunt, Gaydar, Aussiemen were used alongside sophisticated targeting approaches including demand side platforms, smart targeting, YouTube advertising, Google Adwords, search engine optimization and mobile advertising. This was effective as gay men over-index against all mobile statements in terms of mobile usage compared with the rest of the population.

Social media was also central in the mix and included series of ads run through Facebook. This allowed the ads to be highly targeted and a comprehensive content plan with daily posts and updates for the main social media platforms. Given that gay newspapers and magazines are now among the less utilised media among gay men, campaign presence was kept to a minimum. It was limited to 2 gay publications. This helped the campaign to reach men in regional areas outside of our targeted outdoor advertising.

Relevance

‘What’s in it for me?’ If each gay man could find the answer to this question in the Ending HIV platform, it would go a long way towards optimising our chances of meeting our targets.

It was rapidly identified that an interactive website would play a significant role in delivering the key messages and help drive the cultural shift within the gay community. Convinced that this shift would need to be sustained for a few years, the opportunity was taken to develop a web portal dedicated to gay men’s sexual health. This aimed to develop a highly interactive platform where gay men could find generic and customised information, videos and tools delivering more information on how they can be a part of Ending HIV. It also hosted comprehensive content on sexual health, in particular other popular sites ACON developed in recent years.

An entire section of the portal was dedicated to a range of interactive tools and interfaces to allow gay men to find customized information to encourage them to test more often, consider treatment if positive and to  stay safe and minimize the risk of HIV transmission. The tools were distributed as follows:

Tools for Testing:

  • Where to Test – a geo-locational tool to search for the nearest location to get an HIV test or rapid HIV test
  • Remind Me – an email/SMS notification service for gay men to receive reminders for their next HIV test.
  • How Often to Test – a tool to determine how often guys should get tested for HIV, based on their HIV status and number of sexual partners
  • Won’t get Tested? – an interactive tool to educate gay men about HIV testing and demystify the concept of testing
  • Get a Check-up – a geo-locational tool to search for the nearest sexual health clinic, gay-friendly GP and/or bulk-billing GP

Tools for Treatment:

  • Recently Diagnosed? – A tool for recently diagnosed gay men to easily get access to services such as counseling and workshops
  • Won’t get Treated? – An interactive tool to educate gay men about the benefits of HIV treatment uptake
  • Get a Check-up – A geo-locational tool to search for the nearest sexual health clinic, gay-friendly GP and/or bulk-billing GP

Tools for Stay Safe

  • Where to find free condoms? – a geo-locational tool to search for the nearest location to get free condoms in NSW
  • Risk calculator – the tool developed for our previous campaign Know The Risk, which aims to educate gay men on non-condom based risk reduction strategies.

One year after the launch, new sections were added to give customized information and tailored calls to action to address specific needs of priority populations. This was especially aimed at sexually adventurous men who drive 35% of new infections (Prestage, 2006), guys in relationships who drive 25% of new infections and younger men who make up about a third of all new infections in NSW (NSW Health, 2014).  Negative men and positive men each got a dedicated section as well. This addition proved to be very successful at improving the time spent on the website.

Dialogue

Given the massive behaviour changes we are seeking from gay men and the need to develop, grow and sustain a huge level of mobilisation, we moved away from the traditional off-on education campaign model to a new framework. This allows ongoing dialogue and interactions with gay men. This dialogue builds on a new ‘contract’ between ACON and gay men. While gay men commit to increase testing and treatment uptakes while sustaining a strong safe sex culture, ACON commits to play an active advocacy role to facilitate access to rapid and home testing, access to treatment, support, research on PrEP and microbiocides. ACON also committed to deliver the most up-to-date information, and regularly consult with and report back to the community. Paramount for facilitating the dialogue with gay men, engagement tools to interact and participate in the campaign were placed prominently on the portal. In particular, the ‘Ask an Expert’ tool, where users can submit questions on the campaign, testing and treatment which is answered by ACON and commented by other users who signed up to the web portal. Also, the blog section where new articles are regularly posted is another channel for gay men to share and interact.

The ongoing dialogue was also developed via very strong social media activities focusing on delivering relevant, engaging and informative content to our existing network of Facebook fans and Twitter followers. For this, a multimedia editorial content calendar was developed to ensure consistent delivery across the life of the campaign and continuous activity across the social network channels each day. This included an extensive mix of internal and external curated content, specific information and articles relating to the campaign, as well as some general content consisting of personal narratives around HIV, stigma, world news and advances in treatments. Social media activities focused on developing content for Facebook, however this content was replicated and adapted to Twitter. As an example, here is a typical weekly content schedule for phase 3 (focusing on ‘Stay Safe’):

  • Monday: Re-posts from the first phases of Ending HIV, call to action, education and current information on treatments and testing
  • Tuesday: Condom content from Ending HIV website /general content articles
  • Wednesday: Condom content from Ending HIV website, general content articles or rapid testing promotion
  • Thursday: Safe sex ACON campaigns through the years
  • Friday: Question of the week around the Stay Safe component
  • Weekend content would consist of two posts with lighter content.
  • Saturday: Video post of condom campaigns, commercials or general content articles
  • Sunday: Saluting public identities, celebrities who have supported and advocated safe sex campaigns and HIV/AIDS prevention through the years

Ownership

Making sure all stakeholders shared the same vision and ownership of the Ending HIV project was a priority. ACON started by developing 2 separate interfaces for people and organisations to demonstrate their support to the movement. Through this they could choose to stay connected and receive updates and news about the campaign.

These were ‘Join in’, a functionality to allow people to show their support and commitment to the campaign and share the website through their personal networks and ‘Sign up’ a functionality for people to sign up and be able to receive news, updates and participate in the website’s blogs and forums. So far, more than 30 organisations including the City of Sydney, the Kirby Institute (national research center in HIV), other HIV organisations, gay venues or commercial brands support the ACON initiative and their logos are featured on the web portal. Our main funder, the Ministry of Health also decided to use the Ending HIV design as its umbrella branding for all its HIV initiatives.

The campaign furthers this sense of ownership by encouraging face-to-face interactions with the gay communities. Several forums took place to encourage gay men to share their views on topics related to condoms use, testing and treatment and their critical role to end the HIV epidemic. Stunts took place regularly with crews of men wearing Ending HIV shorts and carrying campaign sandwich-boards engaging with the crowd and distributing branded safe packs in the gay areas on weekends. All gay parties and events were systematically covered with a huge Ending HIV branding presence. Our key partners such as gay sport or social groups were also mobilized to disseminate our messages and interact with their members during their events.

Impact, reach, relevance, dialogue and ownership. These five key principles found their full expression in the videos developed. Evaluations (Spina, 2013) showed that videos could potentially play a powerful role in communicating the details of campaigns, embody our vision, and generate a high level of mobilisation while giving a tool to community members and stakeholders to spread the word and increase the campaign’s reach.

Yes we can.

Using a comprehensive range of qualitative data collected in focus groups, quantitative data via online surveys completed by more than 500 men, as well as data from Google and social media analytics, two campaign evaluations have been completed (Spina, 2013a, 2013b). One in May and the other in December 2013. Both were conducted by an independent market research consultant.

So 12 months since the launch of Ending HIV, is this working? Have we met our education and mobilization objectives? Can we see a shift in gay men’s health literacy and behaviours

All data indicates the campaign evaluated extremely well across a range of key indicators. Ending HIV has been a very successful campaign at engaging, communicating and persuading the audience. It achieved a very high level of recall, communicated its message effectively and caught the attention of its target audience. The significant investment in the advertising budget has had a beneficial impact. Outdoor advertising (particularly bus shelters, but also street banners) and social media advertising contributed to high levels of campaign awareness in conjunction with the well-executed creatives.

The implementation tactic of engaging the audience’s attention through eye-catching advertisements, then encouraging them to seek out further information on the internet or social media has been shown to be effective. It is worth noting that those who sought out additional information tended to find the campaign messages more persuasive. Key evaluation findings are as follows:

  • Recall: A very high 66% to 70% of NSW survey respondent recall seeing the advertisements. This is by far one of the highest levels of recall ever achieved by an ACON campaign in recent years. Even more pleasingly (given significant advertising placement occurred in Sydney) this jumps to an even higher 76% recall among Sydney respondents.
  • Engagement: Apart from the high level of recall, there are other indications that the audience found Ending HIV an engaging initiative. One-in-two described the campaign as eye-catching. One-in-four respondents thought the campaign was a lot better than previous HIV advertisements they had seen, while another 30% thought it was a little better. Focus group participants responded well to the design indicating it caught their attention.
  • Communication: Approximately 63% of survey respondents thought the advertisements explain how we can end HIV. This was supported by focus group participants who were able to articulate, at times with a good level of detail, about the steps required to end HIV.
  • Impact on health information seeking behaviour: As there is a limitation to the amount of detail that can be addressed within the advertisements, a key strategy was to direct the audience to the website or Facebook page for further information. This approached worked extremely well with a very high 35% of survey respondents having visited the website or Facebook page and 21% watched the Ending HIV video. Furthermore the survey itself contributed to dissemination of the message, as 30% of survey respondents watched the Ending HIV video which was embedded in the survey.
  • Acceptance of the message: Focus group participants demonstrated acceptance of the campaign messages. They thought asking gay men to test at least twice a year as a minimum was reasonable (although, of course, behaviour does not necessarily match intent) and they were receptive to the Treat Early message as many understood treatments had improved significantly and had heard that increasingly the recommendation was for early testing.
  • Persuasion: Very importantly, the Ending HIV campaign contained a persuasive message. This is a necessary precursor to motivating individual behaviour change. 45% of survey respondents believe that we can end HIV transmission by 2020. Yet the more respondents engage with the campaign the more persuasive the message is as among those who had watched the video it leaps to 61% who believe we can end HIV by 2020 and among those who had visited the website or Facebook page 62% believe we can end HIV by 2020.
  • Impact on health literacy: Pre and post-survey of attitudes towards seven key statements indicate a shift in knowledge is underway
  • There is an increase in the number of respondents reporting having been tested for HIV in the last six months and a decrease in those respondents who have reported never having been tested for HIV.
  • There is an increase in recognition that we can now dramatically reduce HIV transmission.
  • There has been an increase in recognition of the importance of frequent HIV testing.
  • There is also an increasing recognition that early HIV treatment is better for your health and can help protect your sex partners.
  • The most significant change in knowledge has been an increase in the recognition that HIV treatments reduce the risk of passing on HIV, however, the surveys highlight that still one-in-two respondents are either neutral or disagree with this statement.

Critical feedback was minimal. Among respondents who were more critical it tended to be for one of three reasons: a) they were not persuaded by the message and didn’t believe HIV could be ended by 2020, b) they believed using the terminology ‘ending’ was inappropriate because an 80 per cent reduction in HIV transmission is not ‘ending’ HIV, or c) they were concerned about how others may interpret this message and that this may fuel complacency and have unintended impact on safe sex practices.

Many of these respondents raise legitimate issues. The last point regarding the campaign fuelling complacency is a significant risk in running this campaign. Although participants in the evaluation generally understood that the campaign is not saying ‘HIV has ended’ but that we now have the tools to work together to end it. It is important to note that some of the respondents who did not believe the message still indicated that they hoped it was true and often still commented that they liked the campaign.

The Facebook fan database grew from 2,200 to more than 7,700 in December 2013 and to 11,200 fans at the time of writing. These results are alongside other Facebook analytics demonstrating a high level of reach and engagement:

  • Facebook engagement indicator: up to 2.68% (industry average: 0.5% – 0.99%)
  • Average number of Facebook organic reach per week: 3,972
  • Average number of Facebook total reach per week (organic and paid): 211,468
  • Average number of engaged users per week: 2,507
  • Average number of likes, comments and shares per week: 501
  • Total number of Facebook users reached organically: 168,862
  • Total number of engaged users: 16,414
  • Total number of organic impressions: 315,840
  • Total number of impressions (organic + paid): 47,216,072
  • Traffic generated from Facebook to the Ending HIV website: 1,598 visits

The web portal attracted more than 90,000 visits with viewers spending 2 to 3 minutes at each visit. In regards to online advertising, the Google AdWords campaign was the most effective, generating alone more than a quarter of the total traffic generated to the Ending HIV web portal at the most cost-effective rate, successfully targeting NSW. This is followed by Facebook, generating over 12% of the total traffic. These 2 online advertising channels were essential to drive traffic to the Ending HIV web portal.

Survey findings highlight that (particularly among HIV negative men) there is still room to improve the understanding of developments in HIV treatment and the benefits of treatment as prevention. While testing practices appear to be changing, the surveys still find that the respondent’s own testing patterns do not match what they consider appropriate testing practices for gay men. Future iterations of the campaign need to give consideration to focusing on testing more and the benefits of treating early and their role in ending HIV. It is also important to recognise that there remain significant structural impediments to achieving the outcomes desired by the campaign. For instance, one respondent highlighted his difficulties in accessing early treatment.

Conclusion

In an era where information and imagery are ubiquitous, the positive reception accorded to Ending HIV indicates that the revised framing was an effective means to re-engage with a target audience that tends to view all HIV messages as ‘more of the same’. It was time to challenge what used to be unquestionable, and to explore new routes.

Ending HIV was built around 5 pillars: Impact, Reach, Relevance, Dialogue and Ownership. By focusing attention and developing strategies around each of these pillars a greater level of engagement was able to be developed. By tailoring this approach to the existing evidence base the campaign was able to leverage of what we already knew about our target demographic to re-engage them with our new messaging.

Innovative design-driven strategies combined to the power of outdoor media and online channels have proved to have the ability to transform the way gay men think and act for the ultimate cause of tackling HIV transmission by 2020. 2020:

Ending the decade, ending HIV?

Yes, we can.

References

AFAO, (2012) ‘Implementing the United Nations Political Declaration on HIV/AIDS in Australia’s Domestic HIV    Response: Turning Political Will into Action’, NSW (http://www.afao.org.au/library/topic/treatment/DP0912_Implementing-the-UNPD-in-Australia.pdf.pdf) Retrieved 19 August 2014.

Anderson, PL et al. (2012) ‘Emtricitabine-Tenofovir Concentrations and Pre-Exposrue Prophylaxis Efficacy in Men Who Have Sex with Men’ (http://stm.sciencemag.org/content/4/151/151ra125.full.html) Retrieved 1 July 2013

Holt, M et al. (2013) ‘HIV-Negative and HIV-Positive Gay Men’s Attitudes to Medicines, HIV Treatments and Antiretroviral-based Prevention’, AIDS and Behavior, 17(6).

Joint United Nations Programme on HIV/AIDS (UNAIDS) (2011). Political Declaration on HIV/AIDS: Intensifying our Efforts to Eliminate HIV/AIDS. UNAIDS, Geneva.(http://www.unaids.org/en/media/unaidscontentassets/documents/2011/06/20110610_UN_A-RES-65-277_en.pdf). Retrieved 1 July 2013.

Matassa, Matt (May 12, 2011). “Initiation of Antiretroviral Treatment Protects Uninfected Sexual Partners from HIV Infection (HPTN 052)”. Retrieved January 3, 2012.

NSW Health Notifiable Conditions Information Management System (NCIMS)(HOIST), (2014) Communicable Diseases Branch and Centre for Epidemiology and Evidence, NSW Ministry of Health.
(http://www0.health.nsw.gov.au/data/diseases/hiv.asp). Retrieved 21 August 2014

NSW Ministry of Health, ‘NSW HIV Strategy 2012 – 2015: 2013 Annual Data Report’ NSW, (2013). (http://www.health.nsw.gov.au/endinghiv/Documents/AnnualReportNSWHIVStrategy2012-2015DataReportFINAL.pdf ). Retrieved 19 August 2014.

NSW Ministry of Health, ‘NSW HIV Strategy 2012-2015: A new Era’, NSW, (2011). (http://www.health.nsw.gov.au/publications/Publications/nsw-hiv-strategy-2012-15.pdf ) Retrieved19 August 2014.

Prestage, G et al. (2006) Health in Men and Positive Health cohorts: A comparison of trends in the health and sexual behaviour of HIV-negative and HIV-positive gay men, 2002-2005), NCHSR, Sydney, Australia.

Prestage,G et al.( 2010). Pleasure and Sexual Health: The PASH Study, 2009. Monograph, National Centre in HIV Epidemiology and Clinical Research, Sydney Australia.

Spina, A. (2010). Drama Down Under Phase 2 Evaluation Report. Sydney.

Spina, A. (2013a). Whytest Evaluation Report., Sydney.

Spina, A. (2013b). Ending HIV Evaluation Report, Sydney.

Nicklas Dennermalm

Published Online: September 25, 2014
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Abstract

In Sweden, sex workers are often viewed as ‘victims in denial’ by public health authorities.  As a result, Swedish sexual health interventions have traditionally focused on women and utilised face-to-face interventions and exit strategies. Unmistakably, interventions targeting male and/or transgender sex workers that utilise harm reduction approaches or low threshold on-line interventions remain marginalised or non-existent.  This stands in opposition to recent Swedish research on the sexual health of men who have sex with men (MSM) and transgender people (TG).  This research stresses the need for targeted community-based sexual health services. Recent Swedish research also highlights the success of innovative on-line approaches that help male sex workers and TG understand personal risk to HIV and other sexually transmitted infections (STIs), their legal rights and how to access community-based health services. Responding to the research and not viewing sex workers as victims, this paper outlines the design of Sweden’s first bespoke online platform targeting male and transgender sex workers. We outline our unique approach and the steps we undertook to design the Röda Paraplyet webpage (http://www.rodaparaplyet.org[1]) in collaboration with male sex workers and Rose Alliance, a leading sex worker organisation. We argue the voices of sex workers are essential to shifting the Swedish discourse around sex work from one of victimisation that limits sex workers access to Sweden’s extensive evidence-based health care to one that is empowering and increases the safety of sex work, explores how to negotiate condom use and educates sex workers about their rights. In conclusion we illustrate how a broad coalition between organised and non-organised sex workers, LGBTQ organisations, academics and the health care system is essential for creating a sustainable platform of multi-disciplinary knowledge to improve the sexual health and legal rights of sex workers in Sweden and globally.

Keywords: Sex workers, discourse, HIV prevention and health, on-line intervention, human rights, MSM, TG

Recognising the lived experiences of Swedish male and transgender sex workers

This article describes the process of the Stockholm branch of The Swedish Federation For Lesbian, Gay, Bisexual, Transgender and Queer Rights (RFSL Stockholm) work to design an HIV prevention intervention based on the voices of male and transgender sex workers, two groups generally absent in the Swedish discourse around sex work. Sex work is not even a word used in the Swedish discourse, which favours ‘prostitution’ or ‘sex trade’. In Swedish the definition of ‘prostitution’, by default, signifies a degrading act of violence that does not only affect the individual woman (e.g. a ‘prostitute’), but all women. The negative aspect of the terms ‘prostitution’ or ‘sex trade’ in Swedish discourse are the result of the structural violence of men, rather than an effect of stigma from society at large.

In the Order of The Discourse (1993), Foucault illustrates three main procedures of exclusion: the forbidden speech; the division of madness; and the will to truth (p. 7ff). Within this emerges the concept of the prohibition, regulating, among other things, who is allowed to speak and about what. The tradition of these procedures has a long history in Sweden, not only in the case of sex work but other marginalised social phenomena including homosexuality, ethnic minorities, transgender communities, people with mental illness and others. The story of ‘prostitution’ is being filtered through the institutions of the police, social services and government, and reproduced over and over again, creating ‘knowledge’ by an ‘author’, not in the sense of an author of fiction, but an author and co-creator of the discourse. The knowledge produced is that of the Swedish Welfare State and of the ‘supreme’ morals of Sweden. Critically, it is not reflective of the lived experiences of Swedish male and transgender sex workers.

The official Swedish opinion is that sex work is harmful to both the individual and society; therefore efforts should focus on exit, rather than health improvement or harm reduction through information and other interventions. The general Swedish approach is a zero tolerance one firmly against sex work with the main focus on exit, not harm reduction, the latter of which is an approach common in other countries (SOU 2010:49, p 95). Sweden’s zero tolerance approach stands in stark conflict with the more empowering harm reduction approach. The Swedish government’s high priority of providing support for exiting might be the explanation for the lack of social interventions aiming to increase sexual and emotional health among sex workers in a context outside the prostitution units and similar interventions. The dichotomy between zero tolerance and harm reduction has been challenged by The National Board of Welfare and Health (2010, p.3).

RFSL Stockholm believes everyone has the right to define who they are and what they do. There is no one term available to describe people who work in the Swedish sex industry. Most terms in use connote different paradigms or beliefs. ‘prostitute’ and ‘exploited in prostitution’ are examples of terms used in Sweden reflective of an oppressive paradigm. RFSL prefers the terms: ‘sex worker’ or ‘person selling sex’; because these are reflective of an empowerment paradigm. RFSL has a rights based perspective deeply rooted in the empowerment paradigm on our successful work with the lesbian, gay, bisexual, transgender and queer (LGBTQ) community as well as HIV prevention targeting the MSM and the transgender communities. Because the intervention discussed in this paper is an HIV prevention project, we have chosen to use the term ‘sex worker’ as it is used by UNAIDS.

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Figure 1: The safer sex website http://rodaparaplyet.org

This article describes the work conducted by RFSL Stockholm in collaboration with sex workers and Rose Alliance—an organisation operated by and for current and former sex and erotic workers in Sweden—to design the safer sex website http://rodaparaplyet.org[2]. Figure 1 shows the poster marketing the website. The process was a semi-structured process with no ambitions to present the work in an academic setting. The overall design of the intervention reflects and draws on RFSL Stockholm’s experience working productively and successfully with MSM and transgender communities through online interventions via The Sexperts Program[3] (Dennermalm & Herder, 2009).

RFSL Stockholm

RFSL was founded in 1950 and the Stockholm branch was established in 1972. RFSL Stockholm is one of 33 local branches and represents approximately 1900 out of RFSL’s 6700 members. RFSL aims to provide social platforms for its members, address political issues and act as a community-based service provider on health and HIV. RFSL Stockholm was officially an organisation for lesbian, gay and bisexuals. Importantly the transgender community has been a part of the organisation for a long time, but was not recognised as an equal part until 2002. People with a queer identity or queer gender expression were officially added equally recognised members in 2014.

RFSL Stockholm conducts an annual two-day method lab in order to be at the forefront of Swedish HIV prevention efforts with reports written after the lab to document the lectures, talks and workshops. For the 2009 method lab we invited male sex workers, colleagues, clinicians and researchers from Malmö University and Gothenburg University together to set the direction of RFSL Stockholm’s future health interventions (Jonsson & Söderström, 2009). The sex workers did not represent any sex workers organisation but were free agents. To our knowledge, this was the first time sex workers were invited to co-design an intervention in Sweden, which was acknowledged by Niklas Eriksson, one of the researchers invited. The method lab process defined eight key areas from which RFSL and/or other actors could draw inspiration for future work. The ideas varied from research ideas, political statements and health-based interventions.

These eight areas were:

  1. Empowerment;
  2. Create platforms;
  3. Knowledge and openness;
  4. Complete a review on the legal situation, including the criminalisation of procuring;
  5. Highlight nuanced and experience-based images of men who sell sex;
  6. RFSL’s counsellors need tools to meet minors who sell sex;
  7. Identify how to work with the target group from an ‘arena’ perspective and initiate dialogue with the target group with focus on need assessments; and
  8. Identify strategies on safety and safer sex.

Drawing on the experience of RFSL’s HIV prevention work and the method lab, RFSL Stockholm formulated key principles on communication and collaboration with targeted stakeholders:

  1. HIV prevention is not only a question of promoting correct condom usage; it is a collection of tools that can be used as part of a comprehensive holistic health approach.
  2. The intervention should be conducted within the empowerment paradigm, similar to the rest of RFSL Stockholm’s HIV prevention work.
  3. Sex workers are the experts on what it means to be a sex worker, and their voices and multi-facetted experiences are key to making the intervention relevant and accepted by their community.
  4. Sex workers should be included in all key steps of the intervention design.
  5. Key stakeholders must be involved in the work, including local and national sex workers’ organisations, health providers, researchers and other relevant NGO’s. Sex workers and other experts should review all text before being published.

The need to confront the Swedish Model

The Swedish Model

Sweden was the first country in the world to introduce legislation that criminalised the purchase of sexual services rather then selling them. It has become known as The Swedish Model, but is sometimes also referred to as the “Nordic Model” since similar legislations were introduced in Norway and Iceland in 2009. The Swedish Model is being internationally promoted by the Swedish Government due to its self-claimed success of decreasing the amount of sex workers in the three largest cities by an average of 50 % between 1999 and 2008, based on the official evaluation report Criminalisation of Purchase of Sexual Service – An Evaluation 1999-2008 (SOU 2010:49). Both the legislation and its evaluation has been the subject of heavy critique from the several Swedish GOs, NGOs, academia as well as international actors. The legislation stands in stark contrast to health recommendations from UNAIDS and Network of Sex Work Projects (NSWP), among others.

Most Swedish research and reports on sex work have been written within the context of the oppression paradigm. Most of its data were derived from sex workers from a street work setting (Hulusjö, 2013, p.33) (SOU 1995:15, p. 11). The majority of Swedish research on sex work has been focusing on street based women. Women working in other settings, MSM and TG sex workers have been largely neglected, which has created a void in the research. The void further fuels the image of sex work as being an experience, which puts limitation on both the individuals and the Swedish health care system. A health care system designed for perceived needs of street based female sex workers within an oppression paradigm will be single minded and not appeal to sex workers with different needs.

Sex workers as a risk group within Swedish HIV prevention efforts

Within the context of the Swedish HIV prevention guidelines, sex workers of all genders are seen as one of the key target groups. There are no data on HIV prevalence among male sex workers in Sweden, but data from North America, South Africa, El Salvador and other settings state that HIV prevalence among male sex workers is as high or higher than MSM not engaged in sex work, but there are other data from Australia and China suggesting that HIV prevalence among male sex workers being lower than MSM not engaged in sex work (Baral et al, 2014, p. 75ff). Nor are there data on HIV prevalence within the transgender community, engaged or not engaged in sex work, but data from The Centre of Disease control from The United States of America tells us that that trans women in the USA are subject to a high prevalence of HIV, and the group trans men is understudied within the field of HIV (CDC, 2014).

In Consolidated Guidelines On HIV Prevention, Diagnosis, Treatment And Care For Key Populations from WHO (2014) it is stated that key populations with overlapping vulnerabilities (e.g. MSM who sell sex or inject drugs) are likely to have a higher HIV prevalence than key populations with no overlapping vulnerabilities. Sub-groups within key populations are also likely to have a higher prevalence of HIV, for instance MSM with a migrant background. (WHO, 2014, p.6.) In light of this, being ’the other’ becomes even more serious within the context of HIV prevention and other health contexts. Special focus should be placed on two or more overlapping vulnerabilities and/or belonging to sub-groups of the MSM and transgender communites.

Stockholm-based Spiralprojektet were the only programme in 2012 that had HIV prevention for sex workers as an objective. It is a clinic offering HIV/STI testing for all genders as well as pap smear, routine check ups and counselling on abortion and birth control. To our knowledge, there were no sexual health webpages targeting the needs of sex workers of any gender in Sweden before the Röda Paraplyet webpage. The websites on sex work were either political or had the purpose of informing sex workers about the existence of services within the prostitution units of the social service in Sweden.

Collaborating with male sex workers to design an online HIV intervention

The importance of working online, where sex workers recruit potential clients, and providing them with HIV prevention information is a reoccurring theme in the literature on sex work (Björndal, 2010, p. 53) (Eriksson & Knutagård 2005, p 77) (Johansson & Turesson, 2006, p. 39). MSM in general are in favour of online interventions in the context of HIV prevention (Tikkanen, 2010, p. 85). Other needs described in the literature are counselling, strategies for exit, safe spaces, tools to handle clients, legal assistance etc.

Rose Alliance is the only Swedish sex workers’ NGO with a clear empowerment perspective, and therefor RFSL approached them to assist in designing a bespoke Swedish HIV prevention web-based intervention as critical stakeholders. Besides establishing a collaboration, RFSL Stockholm wanted to make sure that the two organisations did not compete regarding funding or initiated overlapping programmes.

After dialogue with Rose Alliance, RFSL Stockholm submitted an application to the Stockholm County, which is in charge of the health care system as well as distribution of national HIV funding for a three-year project which included research, design, launch and marketing of a safer sex website, a series of empowering short films inspired by Dr Joyce Hunter’s Working It Out program, integration with The Sexperts Program for low-threshold safer sex information, an expert network with broad competence and representation, an easy to use safer sex conversation methodology that could be adapted to fit a clinical setting, as well as a peer education setting, and safer sex kits for distribution free of charge.

RFSL did not incorporate all eight aspects from the Method Lab into one project but it did an overview on what was 1) the most effective interventions within realistic budget, 2) possible within the Swedish discourse of ‘prostitution’, since our intervention conflicted with it, 3) which interventions can be sustained in the case funding was cut short and 4) what can be done with sex workers rather than by sex workers.

RFSL Stockholm were given 38, 000 USD, less than what was asked for, so we focused on three areas: A) setting up an expert network including sex workers, using a model developed by LAFA (Knöfel Magnusson, 2009, p. 11) and inspired by the mixture of expertise from the 2009 method lab.  B) Setting up a health website aimed for male and transgender sex workers later named Röda Paraplyet, which is Swedish for The Red Umbrella, the symbol of sex workers rights. C) Explore how we could use mobile phone technology and commercial mobile phone apps as platforms for health interventions.

This paper describes mainly area B and C but will briefly mention the concept of the expert network, area A. The expert network was a network active during the first 18 months of the intervention, the aim was two-fold, first; to collectively raise the awareness and competence about sex work among the participants of the network. Second, to provide feedback on the design of the webpage. We invited Rose Alliance to represent sex workers, staff from key HIV/STI clinics, researchers, other relevant NGO’s and staff from The Stockholm Prostitution Unit.

RFSL began with literature studies and researching existing resources from sex worker initiatives from Sweden and the English speaking world, as part of the formative process resulting in an interview guide (hips.org, hook-online.com, rosealliance.org, Akers & Evans 2010). The expert network provided input on several stages, both in the formative process as well as feedback during the production of the webpage.

The interview guide included personal information such as age, sexual identity, if the person was currently selling sex, et cetera. It also included reasons for selling sex, positive and negative aspects of selling sex, need of knowledge and support, safer sex strategies, strategies concerning personal safety, personal relations in the light of selling sex and strategies for setting boundaries. The aim of the interviews was to gain pragmatic strategies to make a useful and realistic website rather than to generate new knowledge about the target group as a whole.

The strategy to recruit participants included the network of Rose Alliance, the project manager’s personal network as well as an editorial article on qx.se, the main Swedish LGBTQ on-line community. From the thirteen people who RFSL Stockholm got into contact with (twelve MSM and one transgender woman) RFSL Stockholm was able to initiate seven interviews (all MSM) creating a convenience sample. The participants were informed about the purpose of the interviews, they were given the option of not answering specific questions and also to withdraw their participation. RFSL Stockholm viewed the people being interviewed as consultants, rather than participants of research. Therefore we offered a 500 SEK (less than 80 USD) as compensation for their time.

The interviews were conduced in a multitude of ways; in-real life interviews, telephone and via Skype depending on the wishes of the informant. For some of the Skype interviews RFSL Stockholm used the chat interface and for other we used the videophone option, with or without their face showing. The interviewer’s face was always visible to the informant. RFSL Stockholm decided not to record the interviews but to do a word by word typing simultaneously as the interviews were conducted to minimise the risk of the informants becoming uncomfortable. RFSL’s impression is that the organisation gained a high degree of trust with the informants, if this was the result of above-mentioned strategy or something else is unclear. Additional interviews will be conduced during 2014 to include a transgender perspective since we were not able to conduct any interviews with transgender sex workers. These interviews will be based on an updated interview guide and be recorded and transcribed according to academic standards for further research in the field.

The interviews did not provide practical health information on sex as a strategy of self-harm, apart from one informant who stated that he had sold sex as a way of self-harm after being raped as a child. The text on how to balance the private sex with the commercial sex was withdrawn since Rose Alliance were not satisfied with the quality of the text. A new text on that topic as well as more in-depth texts on some key areas will be published later 2014.

As the legal owner of the website RFSL Stockholm were the one choosing which feedback to heed and which to discard. RFSL Stockholm did not look for consensus in the larger expert group but our main principle was that the reviewers from Rose Alliance and medical staff from The Gay Clinic would find consensus. No texts that they did not agree on made it into the published site.

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Figure 2: RFSL’s Formative Process

The content

The content can be divided into eight categories; these categories do not match the layout of the webpage. Most articles begin with putting the theme into a sex work context to make the information more relevant to the reader and to avoid a sense of us merely providing generic HIV prevention to them.

Condom and lubricant

The page provides basic information on condoms and lubricant with focus on condom size to minimize risk for breakage. There are also texts on condom negotiation and how to make sure that the condom is on throughout the sexual intercourse.

Sexual practices

In this section we provide information on sexual technics from the aspect of control, safety and ergonomy. There are texts on oral, vaginal and anal sex, plus BDS. Vaginal sex is written from both cis and trans perspective.

Facts on HIV/STI and legislation

The fact sheets on HIV and STI are up to date basic facts on routes of transmission and treatment. The texts on legislation are written from a pragmatic point of view, they are not political statements but more on what to consider as a sex worker.

Where and how to get tested

Getting tested on a regular basis is important for all MSM/TG; we included general information on how HIV/STI tests are conducted, addresses and what to keep in mind beforehand. We altered the recommendation for regularity from every six or twelve months to every three months. Partner tracing is standard procedure if one is testing positive for HIV or an STI and in the context of the Swedish Model this is problematic since the people the sex worker might name are, from a legal point of view, criminals. Our recommendation is to name them as casual sex partners rather then sex buyers, and to contact them themselves, rather than having the clinic contact them. There is also a free of charge test reminder service via SMS, more about this below.

Setting boundaries

Setting one’s own boundaries and being empowered to uphold these were key findings during the interviews, so this is an important message that was weaved into several articles on the page.

Personal safety

This section is based on recommendations from Rose Alliance used by kind permission rather than the interviews since they did not provide enough recommendations. We also included a piece on where to seek help if you are subjected to sexual violence.

Alcohol and drugs

We have included basic harm reduction information on alcohol and the most commonly used drugs in Sweden with a referral to the LGBT addiction centre.

Support

The project does not provide support but the website do have a referral service via e-mail.

Using mobile phone technology and commercial Apps

Mobile phones are widely used in Sweden, and a useful tool for sex workers in a variety of ways. Dating apps like Grindr, Scruff and Growlr are being used for pleasure and finding buyers or sellers of sexual services. Within the limited budget we received, we identified three activities: 1) Design a mobile phone adaption of the webpage for increased accessibility, 2) Creating a short message HIV testing reminder service and 3) Looking into the possibility of starting an on-line hotline on the main commercial app. Each is described below

Mobile phone version of rodaparaplyet.org

When looking into Google Analytics connected to our web pages, we noticed a high level of users using their smart phone to look for information about safer sex, a majority of them using Apple iPhones rather than other devices. In order to make all of our safer sex web pages more accessible and user friendly, we invested in an adaptation of the web pages to fit smart phones and other mobile devises better (Figure 3).

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Figure 3: Rodaparaplyet.org phone APP

Creating a short message HIV testing reminder service for sex workers

RFSL Stockholm provide a short message HIV testing reminder service targeting MSM and TG with reminders every six or twelve month according to our recommendations for the general MSM/TG population. This intervention was inspired by an intervention described and evaluated by Bourne et al (2011). In the original design, the clinic connected the medical record of their consenting HIV negative patients to a short message system sending out text messages reminding them to get tested for HIV in order to facilitate re-resting. This resulted in this group being 4.4 times more likely to get re-tested (95% CI 3.5 to 5.5) compared to the control group of the study. After consultation with The Gay Men’s Clinic on the medical record system of the hospital, we decided not to connect the short message reminder service to any medical records but to use a default mobile phone subscription sending out the reminding texts. The reason for the decision was the lack of clear regulations at the time regarding confidentiality in the context of digital security and mobile phone technology within the Swedish health services. Also, we identified an advantage in opening up for collaboration with several clinics rather than one. This created a minor change in the method.

When launching a version aimed for sex workers marketed via rodaparaplyet.org and leaflets, we created a three-month interval option according to recommendations from the Expert Network. We also added a feature promoting the option to order free condoms and lube. For discretion, the text reminders come from our general MSM/TG sexual health site http://www.sexperterna.org rather than the sex worker specific http://www.rodaparaplyet.org. One negative aspect of this is that we are not able to identify how many of the users of the intervention are sex workers or how many condom kits are being sent out, since there may be sex workers subscribing to the six or twelve month interval as well as non-sex workers subscribing to the three month interval.

Communicating with sex workers on commercial apps

There is no up-to-date Swedish data on the usage of mobile technology for sex workers but through our contacts with male sex workers we know that it is widely used by sex workers and sex buyers to initiate contact. RFSL Stockholm has been working with peer education chats on commercial LGBTQ on-line communities since 2005 using multi-lingual profiles on-line where MSM and transgender can ask questions, get referrals and order free condoms and lubricant (Dennermalm & Herder, 2009). One of the key aspects of the intervention was that it was set within a context of an existing and, among MSM/transgender, popular platform, thereby being as close to the sexual encounter possible digitally as well as being part of the culture of the community. During 2012 we looked into complementing the Röda Paraplyet webpage and adjust the method to fit into the context of commercial MSM dating apps like Grindr. The adjusted method would be the base of an application for new funding for sex workers within the framework of our intervention.

When one log on to the app, the free app uses location technology to display the closest 100 profiles/users in a grid. Each profile can contain one photo and various kinds of data; distance, age, body type, “tribe” and free text. It can also contain direct links into a variety of social media like Facebook and Instagram. By paying a fee, one can subscribe to Grindr Xtra for additional functions and the ability to watch the nearest 300 profiles. When logged on, there is a green dot visible on the users profile. This green dot will disappear after not being active for 15 minutes the profile remains in the grid. After being un-active for another 45 minutes, the profiles disappear as you become off-line. When off-line, one can only be texted by profiles who previously marked your as a “Favourite” or already texted you. There is no search functionality in the app in order to display non-active users.

The design provided new challenges for us:

  • First, one smartphone based at our central office in Stockholm would provide the service to users in downtown residents or workers while multiple phones strategically located over the region would require a higher level of logistic work and less cost effectiveness.
  • Second, the lack of search functionality would require us to have constant on-going chats with the target group or manually stay active to remain visible in the grid. And last, since we would not been able to digitally “visit” the profiles, we had to re-think our main marketing strategy.
  • Purchasing advertisement space on the apps would be a secondary strategy for two reasons. First, the online hotline would not be in the frame of the app they were using but on our external webpage e-mail questionnaire which does not operate in real time. Our fear was that this might create impatience within the target groups since they had to swap between the app and the phones browser. Second, people purchasing the Grindr Xtra feature also pay not see advertisement, which means that they would not be able to identify and use the intervention.

Ideally, this problem could be solved by a special status of the profile showing endorsement and collaboration with the owners according to our previous work and emphasized by Mowlabocus et al (2014). This special status could also provide a key to the issue of the users only seeing the 100 or 300 closest profiles that had been on-line the past hour, if Grindr could make our profile by default the nearest profile. This would require a deeper collaboration with Grindr benefiting HIV prevention globally. Unfortunately, Grindr were not interested in a collaboration and we were not given permission to pilot an intervention. This setback led to the decision to start buying traditional banners in 2014 to market the Röda Paraplyet webpage.

Conclusion and lessons learned

The Röda Paraplyet webpage was developed on national HIV funding, yet the website turned out to be controversial. The funders did not express concerns with the design or content. Several actors within the field of HIV/STI, as well as the sex workers who participated in the interviews, expressed positive feedback to the page. We did, however, receive unofficial criticism, most of which reached us through third parties. The criticism came from a coalition of social workers, health care professionals and representatives from feminist NGOs. The webpage was accused of encouraging people to sell sex, to ‘normalising’ sex work, and of not representing the experience and needs of the average ‘prostitute’. To boot our illustrations were said to have nothing to do with what ‘prostitutes’ actually look like. The webpage did not correlate with the Swedish discourse of ‘prostitution’: exiting was not the paramount objective of the program. Instead of recognising that the experience of sex work is multi-facetted and therefore needs multi-facetted health interventions, the reactions were hostile.

The concept of a broad coalition has been part of RFSL Stockholm’s work for decades in the fight against HIV and AIDS where we have engaged the target groups, commercial actors, the academia, key clinics and other NGO’s in our work and participated in other’s efforts and as a collective stated: We stand united. As we have described in this paper, this effort has continued within the Röda Paraplyet project and even though the expert network does not exist anymore, the broad coalition of sex workers, clinics, NGO’s, the academia and other key actors still does as we are about wrap up the project’s third and final year in which we are trying out a pilot training on sex worker’s health for Venhälsan, the Gay Men’s Clinic together with Rose Alliance as well as launching a safety guide written by a former male sex worker.

The authors of the policy document Implementing Comprehensive HIV/STI Programmes with Sex Workers compare two different programme approaches from a community empowerment perspective, interventions “done for sex workers” and “done with/led by sex workers”. Our program qualifies into the second category, but not the highest standard of it since RFSL is a LGBTQ organisation; it is not an organisation run for and by sex workers, although some of our members are or have been sex workers. During the editing of this paper, The Lancet released an issue on sex work in which they highlighted that sex worker led health interventions as the most effective.

Inviting sex workers and sex worker’s organisations into one small NGO run project is not enough. More is needed to ensure that the voices of sex workers are heard. First, sex workers organisations must be funded in order to create more professional organisations, which is crucial for a sustainable dialogue. Second, sex workers must be invited to participate, respected and listen to when key political decisions are being made, when official governmental reports are written and within the overall discussion on sex worker’s health.

Health is always politics, and this seems more true than ever in the context of sex work in Sweden. The Swedish Model and the Swedish discourse of ‘prostitution’ stand in stark conflict with international guidelines, recommendations and evidence-based interventions. Röda Paraplyet is forced to exist in the intersection of the two paradigms, a pragmatic health programme confronting and resisting the Swedish discourse of ‘prostitution’. Sweden must realise that its ‘supreme morals’ preclude the health and well-being sex workers, of those they purport to protect.

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The National Board of Social Welfare and Health. (2010). Socialstyrelsens yttrande över betänkandet ‘Förbud mot köp av sexuell tjänst – en utvärdering 1999-2008 SOU 2010:49’. Stockholm: Socialstyrelsen.

Tikkanen, R. (2010). MSM-enkäten Riskhandlingar, Hivtest Och Preventiva Behov Bland Män Som Har Sex Med Män. FOU 2010:4. Malmö: Malmö University.

World Health Organization United Nations Population Fund, Joint United Nations Programme on HIV/AIDS, Global Network of Sex Work Projects, The World Bank (2013) Implementing Comprehensive HIV/STI Programmes With Sex Workers. Geneva: WHO.

World Health Organization (2014) Consolidated Guidelines On HIV Prevention, Diagnosis, Treatment And Care For Key Populations. Geneva: WHO.

On-line resources

  • www.cdc.gov/hiv/risk/transgender
  • www.enannanhorisont.org
  • www.hips.org
  • www.hookonline.org
  • www.rfslstockholm.se
  • www.rosealliance.se

Bibliographic Statement

Nicklas Dennermalm has a Bachelor’s Degree in Peace and Conflict Studies from Uppsala University. Since 2004, he is the Head of HIV/STI programmes at RFSL Stockholm where he has co-developed the Sexpert intervention on sexual health for MSM and TG. He has also participated in several international collaborations, including the TLBz Sexpert intervention in Thailand and the pan-European Correlation Network’s Internet Expert Group. He is currently working on new media communication strategies and safer sex for the BDSM and sex work communities.

Contact: nicklas@rfslstockholm.se

[1] An English version of the website can be accessed here: http://rodaparaplyet.org/en.

[2] An English version of the website can be accessed here: http://rodaparaplyet.org/en.

[3] See http://the-sexperts.org

Sora Park

Published Online: August 12, 2014
Full Text: HTML, PDF (694 KB)

Abstract

This study explores how new users of mobile tablet devices experience and learn to adapt to an environment in which there is a ubiquitous internet connection. A mixed methods study combining netnography and online surveys was conducted among 35 university students in Australia. The portable and mobile nature of tablets enabled participants to be engaged in continuous internet access throughout the day, expanding the situations in which they could engage in multiple tasks. This study focused on the way users prioritise tasks, particularly within the context of studying. Over the course of one year, participants developed their own methods of dealing with the new challenges they encountered. Most participants managed demands on their time and attention by switching between productive and distractive multitasking. Self-regulation strategies were developed through the process of managing the distraction, the main strategies being physical disconnection from the device and mental planning.

Keywords: iPads; mobile tablet devices; digital media; multitasking; productivity; distraction; self-regulation; young adults

Introduction

Mobile media have dramatically changed the media landscape by tethering users to their devices and changing the ways in which they behave around technology and other people (Scolari, Aguado & Feijóo, 2012; Turkle, 2008). Users connected to the network via mobile devices can choose the main space in which they function and interact with others without being physically present. They can switch between multiple realities, constantly realising ambient virtual copresence (Horst, Herr-Stephenson & Robinson,  2010). In the physical space, mobile media enables the state of absent presence, whereby they can be colocated with others without necessarily being copresent (Gergen, 2002). Tablets, mobile phones, and laptops are designed to increase mobility and enable users to access the internet anytime and anywhere. In particular, mobile tablet devices are designed as small, portable computers that can be used seamlessly in both private and public spaces. This ubiquity forces users to make continuous choices about when and where they are going to use the device and whether to apply existing norms or develop new ones.

In the context of learning, digital devices such as laptops and mobile tablet devices expand the potential of effective learning both in and out of the classroom. At the same time, digital devices can be a cause of distraction that diverts students, allowing them to stray from the main task. Although the true benefits of using technologies in learning have yet to be determined, mobile devices have become prevalent in classrooms and learning spaces. This is a new challenge for educators and students alike, who are trying to embrace new technologies for effective learning. This paper discusses how the portability of mobile tablet devices creates new multitasking situations, and how users respond to the new challenges.

The challenges arise from the fact that tablets provide a gateway to the outside world via ubiquitous internet access. In this exploratory study, mobile tablet devices were distributed to students who had never used them before. Students were then observed for a period of one year. Although participants had prior experience with computers and mobile phones, tablets were regarded as unique in the sense that they could be used in any context and that continuous access to the internet was possible. This flexibility of use created situations in which users were challenged to exercise control over the way and the extent to which they used the device. Ubiquitous access to the internet increased both productivity and distraction. This paper reports on the way users responded to and devised new strategies to cope with this constant connectivity.

The experience of multitasking

Multitasking has existed since long before digital technologies were introduced. Secondary activities such as passing notes in class while the teacher is not watching or listening to the radio while reading are good examples. With multifunctional digital devices, opportunities to multitask have increased significantly, and multitasking has become more of the norm than the exception. People are constantly engaged in “continuous partial attention,” whereby they simultaneously process multiple streams of information without fully committing to a single activity (Jones, 2005). Multitasking, in the context of digital media, usually describes the phenomena of dividing attention between simultaneous activities or rapidly switching between two or more tasks. There are two distinct areas in the literature, in which multitasking is usually regarded as a negative outcome of digital media: media multitasking and multitasking in the context of learning.

In media studies, media multitasking occurs when users engage in other activities while consuming media content. Due to the increase in the number of platforms and devices in the home, people can access multiple media sources simultaneously. The simultaneous use of multiple media increases overall exposure, but diminishes the quality of the information that is being processed (Jeong & Fishbein, 2007). Ophir, Nass and Wagner (2009) found that heavy media multitaskers are distracted more easily and are less efficient at switching tasks. Simultaneously performing two cognitive tasks result in less favorable responses (Bolls & Muehling, 2007). In advertising, multiple media consumption reduces the effects of commercial messages (Jeong & Fishbein, 2007; Petty & Cacioppo, 1986; Voorveld, 2011).

Certain media activities are more suitable for multitasking. For example, a study by Pool, Koolstra and van der Voort (2003) showed that listening to music has less impact on students’ homework than viewing television. This is reflected in the activities people choose to engage in when they multitask. Preteens tend to engage in more multitasking when talking over the phone, communicating online, and listening to music (Pea et al., 2012).

Multitasking poses a more substantial problem in the context of learning. Many studies suggest that unless learning activities are built into the technology use, the technology is usually more of a distraction than a learning tool (Fried, 2008; Junco & Cotton, 2011; Kraushaar & Novak, 2010; Wainer et al., 2008; Wood et al., 2012; Wurst, Smarkola, & Gaffney, 2008). For example, computer use has been found to have a negative impact on learning, and this effect is greater among younger and poorer students (Wainer et al., 2008). Those who use laptops in class have lower overall learning outcomes because of the distraction laptops entail (Fried, 2008). A study conducted among young students between the fifth and eighth grades found that numeracy and literacy skills decline when computers are introduced into the household (Vigdor & Ladd, 2010). Even when constructive learning does appear to occur through laptops, the overall satisfaction of student learning has been found to be lower among laptop users than non-laptop students (Wurst et al., 2008). Among older students, Wood et al. (2012) also found that attempting to multitask in lectures had a detrimental impact on learning outcomes.

Students are increasingly challenged by various multitasking activities unrelated to the task at hand, such as Facebook and MSN. Rosen, Carrier and Cheever.’s (2013) observational study confirmed that engaging in social media during study periods negatively affected students’ grades. Junco and Cotten (2011) found that engaging simultaneously in schoolwork and instant messaging (IM) had a negative effect on studying; and, that student GPAs were negatively correlated with the social use of information and communication technology (ICT; Junco & Cotton, 2012). Bowman et al. (2010) tested whether the use of IM during reading hinders the reading process; they found that students took significantly longer to complete the reading task, even when subtracting IM time. Beentjes and Koolstra’s (1996) survey of 8th to 10th graders revealed that student learning was impaired by background media use when studying at home.

Certain activities are more distracting than others. Kraushaar and Novak (2010) distinguished between productive and distractive multitasking, distractive being the non-course related activities performed on students’ laptops during class, such as email, IM, and entertainment surfing. In their study, academic performance was lower when the proportion of distractive multitasking was higher. Learning is less effective when students engage in activities that are not related to the goals of the task. This is because off-task activities increase the extraneous cognitive load (Wood et al., 2012).

The problem with engaging in multiple tasks is that people cannot simultaneously process multiple messages centrally. Peripheral message processing is known to reduce the long-term effects of the messages (Jeong & Fishbein, 2007; Petty & Cacioppo, 1986; Srivastava, 2013). A response-selection bottleneck occurs because cognitive processes are limited in this capacity. When confronted with multiple tasks, the brain must choose among the many stimuli (Borst, Taatgen & van Rijn, 2010; Meyer et al., 1995). The way the brain handles multiple-task performance is to rely on adaptive executive control, which enables substantial amounts of temporal overlap among stimulus identification, response selection, and movement-production processes for concurrent tasks (Meyer & Kieras, 1997). The cognitive load imposed by engaging in multiple tasks negatively affects the learning process because there are limits to the quantity of information that can be retained (Lee, Lin & Robertson, 2012). Learning and storing information are two different activities, involving different areas of the brain. The learning that occurs during multitasking is less flexible and more specialised, which makes it harder to retrieve the information after learning (Rosen, 2008).

There may be a difference between dividing one’s attention and switching rapidly between tasks (Posner, 1990). Multitasking divides the attention among activities, making the selection of information imperfect and resulting in delayed or slowed processes (Smith & Kosslyn, 2007). On the other hand, rapid attention switching occurs when a person rapidly shifts his or her attention among different activities. Since the individual is only attending to one stimulus at any given time, the multitasking doesn’t necessarily compromise the quality of the process. However, when people engage in rapid attention switching, there is a time lag before full attention is restored to the new tasks (Butler, Arrington & Weywadt, 2011; Rubinstein, Meyer & Evans, 2001). In contrast, one area of cognitive psychology suggests a potential benefit of multitasking, having found that training can improve multitasking skills (Meyer et al., 1995). According to scholars who suggest an adaptive view of the brain, information processing is considered to be “massively parallel” and “distributed” throughout components of interconnected neural networks (Anderson & Hinton, 1981). Multitasking in certain tasks can be trained or learned (Saunders & Klemming, 2003). Multitasking affects the type of learning that takes place in the brain and involves a different area of the brain than single-task activities (Foerde, Knowlton, & Poldrack, 2006). Constant multitasking by young people today may train them to juggle multiple activities and use time more efficiently (Carrier et al., 2009).

Adapting to the challenges of multitasking

Multitasking is more prevalent than ever before, especially among youth, and the trend is certainly growing. According to research by the Kaiser Family Foundation, the average amount of time that children aged 8 to 18 report media multitasking increased from 16% in 1999 to 29% in 2009 (Rideout, Foeher & Roberts, 2010). If multitasking is among the cognitive activities that can be learned, then we can assume that exposure to certain technologies will enhance users’ ability to multitask. Carrier et al. (2009) compared the Baby Boomers, X Generation, and Net Generation in their multitasking behaviour and found that the youngest generation exercised a greater amount of multitasking, but that the types of activities engaged in were similar across all generations. This implies that multitasking is an acquired skill and that people have to learn how to do it efficiently. Cognitive flexibility is a characteristic of the human brain that helps people pursue complex tasks, such as multitasking, and adapt to changing demands (Ionescu, 2012).

However, most studies about multitasking are cross-sectional and thus cannot identify long term changes over time. Furthermore, most studies that measure the distracting impact of new technologies do not acknowledge the novelty effect of a new device when it is introduced into the user’s existing digital environment. New digital devices are presumed to be inserted seamlessly into the users’ everyday context. Users adjust to the multi-platform, multi-device environment by devising their own strategies. Self-regulated learning can be used to manage multitasking with digital devices. Studies on self-regulation conclude that effective learning occurs when students block out distractions while engaged in learning activities (Sitzman & Ely, 2011). For example, Wei, Wang and Klausner (2012) tested the relationship between self-regulation, text messaging in class and cognitive learning. Students who have higher self-regulation levels are less likely to text in class and more likely to sustain their attention, and thus achieve better learning outcomes. The will to consciously sustain focus is a vital factor in self-regulated learning (Roeser & Peck, 2009).

Research Questions and Methodology

Previous studies suggest that multitasking using digital devices compromises the overall quality of learning outcomes. However, less is known about the user experience during the multitasking process and the way they deal with the challenges that arise. This study examines how users of mobile tablet devices respond to the ubiquitous access to the internet, particularly in a learning environment, with a focus on their perception of their multitasking behaviour.

Drawing on previous studies, we can conclude that (1) multitasking behaviour is becoming more prevalent in the digital age; (2) certain activities impose less cognitive load and are thus easier to multitask; and, (3) human brains are adaptable to the environment, within limits. It is expected that, due to ubiquitous access to multiple platforms, people are faced with an increased demand for multitasking and that they learn to adapt. The following exploratory research questions were developed to explore the experience of users while adapting to a new digital device.

Research Question 1. What are the perceived negative and positive effects of multitasking among young adults after they are given mobile tablet devices?

Research Question 2. How do young adults adapt to and balance productive and distractive multitasking after they are given mobile tablet devices?

The data analysed in this study was drawn from a larger longitudinal study of young adults conducted between August 2011 and August 2012. A total of 35 first and second-year full-time university students at an Australian university were recruited through on-campus bulletin boards and the university’s online portal site. Voluntary participants were directed to a Web link, where they were asked to complete a short screening survey. Screening questions included age, gender, and ownership of digital devices, including mobile tablet devices. A quota sample was selected on the basis of the population’s gender and age composition. Only those who did not already own a tablet device were invited to take part in the study. For a summary of participants’ demographic profiles, see Table 1.

Table 1. Summary of participants

Variables N %
Gender Male 15 43
Female 20 57
Type of residence Live with family 19 54.3
Off campus residence 6 17.1
On campus residence 10 28.6
Age 18-20 21 60
21-25 14 40

In order to track changes throughout the course of one year, both quantitative and qualitative methods were used. Two sets of longitudinal surveys were conducted. The first set consisted of pre-study, mid-study, and post-study surveys. The second set was a monthly survey conducted from September to November 2011 and from February to July 2012. An online community discussion forum was open throughout the study, enabling researchers to engage in netnography. Netnography is a participant-observational research strategy conducted in online spaces (Kozinets, 2010). The researchers actively participated in the online environment by posting questions, prompting answers and engaging with the participants. This study reports mainly on the findings from the online discussions.

With the exception of the pre-study survey, all of the data were collected after students had been given their mobile table devices. The model that was given was the iPad II, with Wi-Fi and 3G access. Wi-Fi was available on campus at no extra cost. Students who wished to use 3G technology were required to purchase a SIM card and a subscription to a mobile 3G service. All names used in this study are pseudonyms. Prior to the study, appropriate ethics approval was obtained from the National Health and Research Council through their National Ethics Application Form (NEAF).

The participant recruitment procedure resulted in a cohort of students who owned various digital devices and were regular users of the internet. In all, 74.3% of participants owned a smart phone and 94.3% owned their own laptops or computers (see Table 2).

Table 2. Device ownership prior to the study

Type of device

Ownership before study

N

%

Mobile phone Smart phone

26

74.3

Regular mobile phone

8

22.9

Do not own

1

2.9

Laptop or PC Personally own

33

94.3

Do not own*

2

5.7

*Students who did not own their own computer/laptop were still able to get access to a home computer/laptop

Multitasking behaviour in continuum

Multitasking behaviour is not new to the digital era. In modernity, time is a basic unit of measurement used to determine value. High productivity is regarded as the completion of a certain process in a reduced amount of time. According to Southerton and Tomlinson (2005), “time squeeze” is a general characteristic of contemporary suburban households and people are expected to manage multiple tasks within a limited timeframe.

Media multitasking was already prevalent among study participants before the study. In the pre-study survey, participants reported that they frequently engaged in an additional activity, such as using the computer, playing games or text messaging, while watching TV or listening to music. Among the participants, 14.3% reported doing so every time they watched TV, and 31.4% did so every time they listened to music. This pattern did not change significantly after using mobile tablet devices for a year. For most participants, adding one more device did not significantly increase the amount of media multitasking.

However, new situations emerged in which they could engage in both media and non-media multitasking. For example, chatting with friends online while watching television was reported as a new advantage of having a portable device that they could carry around within the home. During classes, they frequently used their iPads to multitask. During lectures, 91.2% of participants searched for information on their iPads. A total of 82.4% said they shared information with others outside of the lecture through tweeting, posting, and emailing. Similarly, 85.3% reported reading on their iPads during lectures and 91.2% engaged in iPad activities that were not related to the lecture.

The co-existence of distractive and productive multitasking

After receiving their iPad, participants reported identifying new situations in which they could multitask. These included using their iPads on public transportation, in classrooms, while engaging in conversations with others, and at home while watching television. Most multitasking activities were accepted as natural, efficient and “becoming the normal trend” (Neil). Using their iPads for social network sites, emails, and browsing during a conversation with other people was not regarded negatively, but was rather considered complementary to the primary activity and “fantastic for time management” (Jean). When Heather was in Peru, for instance, she was able to engage in a conversation with the locals using her iPad for translation. Other examples of complementary multitasking included tweeting during a television program that invites audiences to participate via Twitter (Aiden), and seeking information related to the main task (Mia).

While consuming media content, iPads were used not only to search for information related to the media content, such as visiting the homepage of the broadcaster (Elizabeth), but also to use time efficiently, such as browsing for used cars while watching TV and “looking up other spur of the moment ideas” (Jacob). At times, it was used to co-view a television program with a remote friend. “The Friday night AFL game was on and whilst watching the game at home on my couch I had my iPad out having a conversation with a friend from home about the game that was unfolding in front of my eyes” (Donald). “Using my iPad, I accessed the SBS website that was rating Australia’s vote for Eurovision, which added another angle to watching the show” (Rita). Many participants found multitasking to be a positive experience, whether it was during a conversation or watching television.

I think it is natural to try to multitask in today’s society and the dual conversation is an element of that. Today, I was setting up my mother on Facebook and teaching her how to use it, when my work rang. I continued to teach mum [the] technology while on the phone… Technology has given me the ability to hold these multiple conversations for longer and more stealthily.” (Patrick)

I feel that since I got the iPad I tend to engage in technology multitasking because while I’m watching Foxtel on the one hand, I’m also reading lectures on my laptop, while flicking through Facebook on my iPad.” (Mary)

At the same time, participants were aware of the distraction that iPads presented to them due to this capacity to multitask.

“When watching Q&A on ABC, I would engage in a Twitter conversation using the hashtag for the television show with other viewers… Though this is encouraged by the producers of the show itself, it would at times distract [me] from the actual show itself because of the enormity of the online conversation.”(Henry)

The cause of distraction was the continuous access to the internet through the iPads. This led participants to procrastinate on their main task in lieu of the various applications that caught their attention.

“[The] ease of carrying around the iPad also has contributed to its ability to distract. I also find the iPad not only a distraction, but a good option for a form of procrastination—always better to be playing games or chatting on Facebook than working on an assignment.” (Rene)

iPad users easily tune out because it is “too easy to access information quickly, whether it be relevant or not” (Jacob). The push service was found to be distracting because “messages from Facebook pop up at the top of the screen when working on something else” (Rene). In most cases, the additional tasks were habitual behaviours that they engaged in without purposely thinking or planning. Elizabeth suggested that the distraction was due to the ubiquity. “Checking Facebook and email whenever logged on to the internet is habitual” (Elizabeth). The constant accessibility of the internet is the source of distraction and iPads have made it easier to tap into that opportunity.

Being connected to the internet constantly, especially in lectures, makes it very tempting and very easy to tune out.” (Jacob)

The escapist notion of media can be applied to such situations. iPads provide users the opportunity to avoid activities that occur in confined spaces. Instead of engaging in the main task, participants often shift their attention into their own virtual spaces.

“[It is] quite easy to take it to [class] and every now and then stray from what we are doing to look at my Facebook.” (Elizabeth)

It is, in a way, leaving the physical space to be elsewhere—in the online space. Noah often “tunes out” when the “class becomes boring.” Similarly Aiden “constantly refreshes Facebook and Twitter, hoping something interesting might appear during dry lectures.” However, the purpose of their multitasking extended beyond simply trying to avoid a task. Participants were feeling a constant need to be connected to their virtual world.

“While studying for my final exams last semester, I got into the habit of keeping Facebook open on my iPad, which was sitting in front of me. This allowed me to look at the flow of information coming in from the Facebook news feed while studying.” (Aiden)

Participants considered their iPads to be an efficient tool to maximise their use of time, but also a playful device that distracts them when they have to engage in serious tasks such as studying or attending lectures. Both sides of this duality of distraction and efficient multitasking were well accepted among the students. They did not consider the two concepts to be mutually exclusive; both behaviours co-existed in their everyday context.

“It has taken procrastination to a whole new level! Also, it has taken productivity to a new level.” (Brian)

Most participants grew up in media-rich environments. They had had their own mobile phones since approximately the age of 12 and had computers in their houses before the age of five. As such, it is not surprising that they have practiced backchannelling or experienced ambient virtual copresence (Horst et al., 2010) in classrooms. The difference is that in secondary schools, there were rules at school that prohibited or banned such activities, but in a university setting, there are no explicit rules governing their behaviour in class; they are left to decide for themselves.

The survey results confirm the participants’ duality in their perception of multitasking. In the post-study survey, 29.4% of participants thought that iPads had made them better learners, and 88.2% thought that iPads were useful in the classroom during lectures or tutorials. On the other hand, 58.8% admitted that when they were using the iPad, they were easily distracted by other functions or apps. Most students reflected on how distracting, yet helpful, the device was during their studies. In all, 20.6% of the participants thought that even though the iPad has some features that help in studying, the overall impact was distraction. A full 73.5% reported that even though it was a distraction at times, the iPad had helped them to study more efficiently. Only 5.9% thought it helped without any distraction.

Negotiating multitasking by adopting self-regulation strategies

Tablet users encountered situations in which they had to process multiple threads of conversation. Learning to manage time across various activities was one of the challenges many of them mentioned.

I was once in a lecture taking notes on the given subject. While this was happening, I was receiving notifications from Facebook that someone was trying to contact me about a group project for another subject. I have then had to answer these questions on the group project, which has prohibited me from taking any more notes on the given lecture. I was trying to still listen to what was being presented, yet it was too difficult to maintain this attention while trying to organise a meeting with my group for a different subject.” (Anna)

When this happened, they had to devise their own rules and boundaries by experimenting and negotiating with themselves to find an optimal solution. The way they coped with this can be described as a self-regulation process whereby they acquired appropriate “skills” to control their use of the device. Self-regulation is a process that guides an individual through a goal-oriented task over time when circumstances are changeable. This usually occurs when a routine is disrupted (Karoly, 1993).

Similar to the findings reported by Quan-Haase (2010) in a study on instant messaging (IM), participants in this study adopted physical disconnection strategies when coping with distraction. Disconnection is the act of banning physical access to the device altogether, either by “leaving the iPad behind” (Diana), “not using it in lectures” (Kathryn), or “banishing the iPad to the lounge room” (Jean). Simply not leaving it on the desk when they needed to study was one of the banning methods (Jean). Another method was to customise the iPads during certain periods so that they would be less tempted to use it for off-task activities. Anna reported deleting distracting apps during the exam period and re-installing them afterwards. Andres exerted self-control by closing all apps that were not relevant to the main task and deleting some until after the work had been completed. In contrast, Elizabeth’s strategy was to open useful applications that were directly related to the main task so that she would not be tempted to visit Facebook. Additional effective ways of minimising distraction, included turning the volume down so that they would not be distracted by the noise (Donald), or in other cases, turning the volume up so that they would not feel inclined to play games in the presence of others (Brian).

In contrast, some users chose to mentally plan ahead for the distracting activities in order to exercise greater control when the situation presented itself. For example, one method was to pre-schedule the distraction so that they could minimise the temptation when they were engaged in the main task. By anticipating the distraction, users could proactively deal with it before it actually occurred.

When I do a day of study I generally give myself set breaks for 10–15 minutes and will play on my iPad in those breaks, but I rarely spend longer on it than I’ve given myself.” (Evelyn)

Time management and self-control skills were both necessary to implement this strategy. Evelyn used “technology breaks” to address her internal needs. She reported spending about 20 minutes on studying, allowing herself to be distracted for a few minutes, and then returning to her studying. In Heather’s case, she would reduce the temptation to be distracted during her main activity by engaging in all of the distracting activities first, and then focus on her studies.

Both placing a physical ban on the use of the device and pre-scheduling distraction can be characterized as self-regulatory techniques employed when acquiring digital media literacy. Being able to access, use, critically understand and appropriate the device are important aspects of digital media literacy (Park, 2012). Digital media literacy is a multidimensional concept that includes not only the device literacy, but also the ability to engage and exercise social norms. These strategies were adopted once users were comfortable using the device, after several months of exploring it. The time it takes to become digitally literate is reflected in the fact the method of self-regulation was not always effective. Participants reported that it required a lot of “self-control” (Rita) and the user must be “strong” (Chloe). Some reported difficulty with this self-regulation: “If [distraction] is going to happen, it usually does” (Mason); and, “no matter what I do, I always find myself on Facebook, and it is so easy to just tune out of the lecture or tutorial” (Noah). Coping with distraction is an ongoing process of negotiation. Dylan deleted all of his distracting apps from his iPad, but found himself pulling out his phone with the same apps.

Rather than attempting to increase the ability to multitask across all activities, participants closely monitored their use and limited their multitasking activities that were distracting. For example, when they were studying, they chose not to engage in multitasking, but rather to manage their time so that they would not have to multitask. It may be that one year was not sufficient time for them to train themselves in effective multitasking during focused activities. Nevertheless, participants quickly learned how to switch between productive multitasking and regulating distraction depending on the context and the task at hand.

Unless learning is motivated and directed by goals and positive outcomes, using digital technologies may not be an immediately rewarding experience. According to Bandura (2001), intentionality is the power to originate actions for a given purpose. Self-reactiveness suggests that an agent “has to be not only a planner and forethinker, but a motivator and self-regulator as well” (p.8). Considering how a person acts, reacts and reflects upon his or her own behaviour is a useful way to analyse the manner in which mobile tablet users cope with and negotiate their device usage practices.

Self-regulated learning is a general disposition that students bring into the classroom in an engaged and motivated manner (Boekaerts, 2005). It defines the way students learn the subject matter. In this case, self-regulated learning was used as a strategy for dealing with distraction. In an era in which multiple digital devices are being introduced into and used in the classroom, the effectiveness of learning is increasingly dependent on students’ abilities to exert self-regulation. This involves the process of learning how to use new devices per se, but also devising rules and routines of appropriate usage from the user’s standpoint. The process of self-regulation when learning how to use mobile tablet devices in the context of studying illustrates how young people acquire digital media literacy.

Conclusion

This study observed young adults over a period of one year and examined how they learned to manage and address the new challenges posed by adding another digital device to their digital environment. Young adults who had never owned a mobile tablet device were given iPads and observed over the course of one year. Mobile tablets, while similar to laptops and smart phones, presented the participants with a novel situation, i.e., continuous connection to the internet. The ubiquity of internet access was regarded as an added convenience in most settings. In many situations, multitasking was regarded as productive and helpful in improving time management. However, multitasking posed a challenge in the context of studying.

Participants struggled to balance their studies as they faced intensified multitasking situations. Despite the fact that they all had prior experience with multitasking to some extent, they encountered new situations in which they were now habitually engaging in multiple tasks. Situations emerged in which they needed to devise coping strategies to focus on one task. The main methods of dealing with such challenges were either to physically disconnect themselves from the device or to plan ahead and manage the anticipated distractions.

Learning to use a new device requires not only technical skills, but also an understanding of the broader social meaning of using devices in various contexts. Due to the portability, students were able to carry their tablets everywhere. Participants explored, experimented, and negotiated various uses of the device according to the different contexts in which they found themselves. At first, participants went through a novelty period. This is when they experimented with the device and spent enormous amounts of time using it. After this phase passed, they were able to reflect upon their usage patterns and establish what they thought to be optimal use. During the process, self-regulatory strategies were adopted, whereby they eventually found a place for the new device amongst the various digital devices they used.

Acknowledgements

This research was supported by the Public Communication Research Cluster at the Faculty of Arts & Design and the Information and Technology Management at the University of Canberra (2011-2012).An earlier version of the paper was presented at the 14th annual conference of the Association of Internet Researchers.

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Biographical Statement

Sora Park is Associate Professor and Course Convener of Media and Public Affairs at the University of Canberra. She is an inaugural member of the News & Media Research Centre. Her research focuses on digital media users and implications for media policy.

Contact: sora.park@canberra.edu.au +61-2-6201-5423

Owen Barden

Published Online: August 12, 2014
Full Text: HTML, PDF (694 KB)

Abstract

This paper examines the role of identities in underpinning and activating literacies learning in a small class of adolescent students labelled with dyslexia. It derives from a project in which teacher-researcher and student-participants co-constructed a Facebook group page about the students’ scaffolded research into dyslexia. The study investigated an apparent paradox: that although literacy demands are often cited as barriers to learning and participation for students labelled with dyslexia, social networking technologies seem to motivate at least some such students to willingly undertake significant amounts of reading and writing. Two interrelated potential explanations are investigated to attempt to resolve this paradox. Firstly, that the social and collaborative nature of Facebook literacy events and practices, which promotes a sense of shared identity amongst the participants, is itself motivating. Secondly, that identity strongly influences engagement with texts. Three intertwined strands of identity work emerged from analysis of the data. These three strands underpinned the students’ literacy events and practices. Each strand is elaborated, through reference to interview data and classroom dialogue. The study concludes that Facebook offered an affinity space in which the students inhabited projective identities which reciprocally shaped their literacy practices

Keywords: Facebook; dyslexic; identity; adolescents; social network site; new literacies

Facebook and education

Digitally mediated social networks are a relatively new phenomenon, yet use of social network sites (SNS) is one of the most popular everyday activities on the World Wide Web (Stirling, 2011). One person in twelve on the planet has a Facebook account (Aydin, 2012), and the site is almost ubiquitous in some countries, with approximately 1.3 billion current monthly users worldwide (statisticbrain.com, 2014).  Some people’s engagement with the site is so intense, and such are its communicative affordances (O’Brien & Voss, 2011), that Allen (2012, p214) claimed Facebook offered “something of an equivalent to the internet.” That is, their experience of the internet could be almost entirely mediated through the site. The appeal of digitally-mediated social networks to students and young people is widely documented (e.g. boyd 2008a, 2008b; boyd & Ellison 2007; Davies 2012). Despite some signs that UK teenagers are now abandoning the site in favour of others, at the time of this study the UK had the second largest number of users worldwide at 29.8 million, or 58% of the 54.1million people online (Arthur, 2011). True to its heritage at Harvard, students are amongst the most prolific Facebook users, with the site part of the fabric of their lives as they weave complex tapestries of communication which combine multiple online and offline threads (Allen, 2012; Hulme 2009; Facer 2011). Despite this ubiquity, there is a large degree of uncertainty over how, and even whether, educators should use SNS like Facebook to engage students in academic study. For instance, there are claims that Facebook has a detrimental effect on engagement and grades (Kirschner & Karpinksi, 2010), and that some students simply don’t want Facebook in the classroom, preferring to keep the social sphere separate from the academic (Prescott, Wilson & Becket, 2013). Although there is an emerging body of research on pedagogical applications of SNS,  as yet knowledge in this area remains limited (Coates, 2007), the evidence is mixed, and the student voice is largely absent from the literature (Prescott, Wilson & Becket, 2013). In addition, there is some evidence that a significant proportion of young people are prolific yet unsophisticated internet users (Crook, 2008; Pangrazio, 2013; Zimic, 2009).  Therefore, one task facing researchers is investigating and developing understanding of the educative practices and tools afforded by digitally mediated social networks (Asselin & Moayeri, 2010; Greenhow & Robelia 2009; Moayeri, 2010).

Decisions about whether to exploit SNS in education will inevitably be determined by context as well their affordances (Allen, 2012). What cannot be denied is that many young people seem to be interested in and motivated to learn by digitally-mediated social networks, and many are open to the idea of using them in the classroom (Roblyer, McDaniel, Webb, Herman & Witty, 2010).  A number of advantages are posited for exploiting SNS.  There is the claim that the kind of collaborative learning SNS promote is in tune with broader cultural, Web 2.0 influenced shifts towards social constructivist epistemologies (Dede, 2008; Kress, 2010). Such learning can be deemed more authentic by students because it involves collaboration in the construction and distribution of knowledge, and may combine informal and offline elements (such as classroom discussion) with more formal aspects (Deng & Taveres, 2014; Moayeri, 2010.)  There is also the claim that SNS offer opportunities to think creatively and solve problems, again working collaboratively (Alvermann, 2011). Moayeri (2010) claims that SNS can foster closer classroom communities. Echoing this, Alvermann, Hutchins & McDevitt (2012) write that SNS can bridge space between more and less popular or shy students, and between genders, promoting sociality.

Dyslexia, literacies and identities

Identity is shaped in reciprocal relationships with texts (Alvermann, 2011; Barden, 2009; McCarthy & Moje, 2002). Dyslexia is almost invariably defined and conceptualised through reference to significant difficulties with meeting normative cultural and curricular literacy demands (Bell, McPhillips & Doveston, 2011; Hornstra, Denessen, Bakker, van den Bergh & Voeten et al 2010; International Dyslexia Association 2002; Miles, 1996). Students labelled as dyslexic therefore frequently inhabit identities as literacy ’strugglers’ or failures. Rather than being valued as “thriving, literate, intelligent human beings with important contributions to make” (Greenleaf & Hinchman, 2009 p.4), all too often students labelled with dyslexia become protagonists in socially constructed narratives of failure (MacDonald, 2009).  Exclusion from, and rejection of, reading and writing, frequently has negative long-term effects on self-concept and senses of identity, educational trajectories and hence life chances  (Alvermann, 2001; Collinson & Penketh, 2010; Gee, 2001; Madriaga, 2007; Tanner, 2009; Williams, 2003 & 2005).  To use Foucault’s (1975 & 1980) terms, such students become ‘docile bodies’, disciplined by the normalising gaze and techniques of the social institution of the school into internalising identities as failures.

Issues of identity are particularly pertinent in adolescence when identities are relatively fluid and particularly susceptible to influence from peers and role models. Although identities are lived by individuals, they are also socially constructed (Pangrazio, 2013), and paradoxically both possessed by and possessive of the individual (Jabal & Riviere, 2007). SNS make social networks that might otherwise remain invisible visible (boyd & Ellison, 2007), and demand that users construct, manage and perform what (Gee 2000, 2001; see also Alverman, 2011) terms their Discourse-identities within those social groups. Discourse-identities are ways of being, belonging and being recognised, sustained in part through literacies. Mallan (2009) argues that SNS provide new ways for virtual identities to be constructed, presented and narrated in public.  Identity is therefore not simply a manifestation or marker of an individual’s internal states or dispositions, nor merely how individuals are recognised; individual and group identities in SNS are also performative, collaborative and collective.

Using Facebook to communicate with peers requires encoding, decoding, interpreting and analysing significant amounts of text, often whilst simultaneously ‘dealing with’ several conversations (Lewis and Fabos 2005). Given that  Facebook demands not only significant amounts of reading and writing, but reading in writing in public, where potentially stigmatising weaknesses are exposed,  we might reasonably anticipate that students labelled dyslexic, and who may inhabit identities as literacy strugglers or failures, would avoid the site. Put another way, such students might perceive the literacy demands of Facebook threatening their Discourse-identities within peer groups. Unsurprisingly, studies have found that students labelled with dyslexia continue to struggle in virtual environments like chat rooms and discussion fora that require them to work read and write in much the same way as they would be expected to with pen and paper (Woodfine Baptista Nunes & Wright, 2005; Williams, Jamali & Nicholas, 2006; Hughes, 2007). In addition, and as Alvermann (2011) observes, social networking  – and other online activities – require adolescents to decode and encode a complex mix of words, symbols, and genre-specific syntax as well sounds and images – skills not typically taught in traditional literacy classrooms, but which are nevertheless gaining social value (Moayeri, 2010). We might anticipate that this multimodal complexity would act as a further deterrent to those deemed to struggle with literacy. In addition, SNS can  create anxiety and pressure to appear popular (Pangrazio, 2013).  However, rather than exacerbating the difficulties associated with typographic literacies, it seems, the shifting balance from linguistics to multimodal semiotics (Kress, 2003 & 2010), combined with developing economies of recognition and recognition (Allan, 2012 p214; Mallan 2009 p57), participatory cultures (Jenkins, 2006), opportunities to connect with others based on interests and personality (Mallan, 2009; Alvermann, Marshall, McLean, Huddleston, Joaquin & Bishop, 2012), and the ability to draw on diverse digital materials and tools (Moayeri, 2010) suggest the potential to realise the possibility of positive shifts in self-esteem, power and agency for students labelled ‘dyslexic’ and therefore literacy failures. They may thus enable such students to use power positively and productively to resist dominant epistemologies and discourses of deficit (Foucault, 1980).

For example, some evidence suggests that undergraduates reporting low satisfaction and low self-esteem, a group likely to include those with labelled with dyslexia (Pollak, 2005), gain more social capital from intensive Facebook use than their non-dyslexic peers (Ellison, Steinfeld & Lampe, 2007). Barden (2012) found that Facebook offered an arena for critical and playful learning about and through literacy for a small group of adolescent students labelled as dyslexic. The social imperative to maintain peer networks and increased exposure to language have also been shown to improve spelling and contribute to motivated wordplay by some dyslexic students when SMS “texting” (Veater, Plester & Wood, 2011). Hughes, Herrington, McDonald & Rhodes (2011) describe the ways in which social learning via e-portfolios boosted two dyslexic university students’ perceptions of their literacy skills. Positive reframing of dyslexic selves as successful learners resulted (Gerber, Reiff & Ginsberg 1996; Tanner, 2009). As part of the shift towards social constructivist epistemologies, SNS thus appear to offer opportunities for meaningful, authentic “knowledge work” (McNely, Teston, Cox, Olorunda, & Dunker, 2010) and developing agency. A sense of an appreciative audience motivates authorship (Alverman, Hutchins & McDevitt, 2012). Motivation to engage with multimodal content in order to write their worlds into existence means students produce texts which help construct Discourse-identities in ways that allow them to present themselves as literate beings, rather than literacy failures (Alvermann 2011). They can also prepare for the future by developing critical digital literacies, engaging with web-based resources to foster literacy skills that are rapidly gaining symbolic capital in our increasingly high-tech world (Alvermann, Marshall, McLean, Huddleston, Joaquin & Bishop, 2012). Developing a sense of agency, with students engaging in knowledge work that helps them write themselves into the future through participating in digital networked publics (boyd, 2008a, 2008b; Facer, 2011; McNely, Teston, Cox, Olorunda, & Dunker, 2010; Merchant, 2007), may also be valuable in preparing young people for future careers and life choices.

As Hall (2012, p.369) notes, and remedial literacy programmes for dyslexic students endlessly exemplify: “What gets ignored in the rhetoric of helping students become “good readers” is that doing so requires more than helping them learn specific skills. It requires a shift in their identities.”  Identity thus has important literacy pedagogy implications, especially among those who have been characterised as “slow” or “struggling” readers (Anderson, 2007; Lenters, 2006; McCray, Vaughn & Neal, 2001). However,  the available literature currently “comes up short in terms of detailed analyses of the ways in which youth use web-based resources to construct their online identities, while simultaneously developing the digital literacy skills needed for learning in a world where attention, not information is in short supply”  (Alvermann, Marshall, McLean, Huddleston, Joaquin & Bishop, 2012 p185).

The fact that digitally-mediated social networks are so popular and can motivate learning through literacies amongst students traditionally marginalised by school literacy suggests that their classroom use is an issue which has not been sufficiently explored. Technologically-mediated emerging literacy practices also challenge assumptions about the relationships between so-called ‘dyslexics’ and literacy. The deficit model of dyslexia assumes literacy is an individual technical skill, whereas Facebook exposes both the social and ideological nature of literacy practices, and the deployment of new literacies (Street, 2003, 1984) Against this backdrop, the study reported here investigated the classroom use of Facebook by a small group of adolescent students labelled as dyslexic. It attempted to answer the following research questions: What does the students’ engagement with Facebook reveal about their motivation to learn through literacy, and their sense of identity? It was hoped that investigating these questions would generate ideas for developing a more inclusive contemporary pedagogy. This study therefore represents an attempt to let go of tired practices and join in the exploration of new forms of text, and enable students to engage meaningfully in learning that both extends and elaborates on the literacy practices they already own and value (Alvermann, 2011).

Methodology & methods

Methodology

For this study, a “fledgling methodology” (White, Drew & Hey, 2009 p.21) combining elements of action research and case study with an ethnographic sensibility (Green & Bloome, 1996) was devised (Barden, 2013). This methodology and combination of methods was deliberately complex in order to try and provide thick descriptions of what was happening “on the ground”, here-and-now, in what Selwyn (2011, p164) calls the “messy reality” of digital technology use.

Williams (2008) counsels that in thinking seriously about students’ identity figures in their literacy practices, we must talk to students about how and why they write online, in order to find out from them about their practices and social skills. Accordingly, the methodology of this study permitted an extensive range of qualitative methods including participant-observation, classroom video recordings, semi-structured interviews, dynamic screen capture (Asselin & Moayeri, 2010; Cox, 2007) and protocol analysis (Ericsson & Simon 1993; Lewis & Fabos, 2005). Dynamic screen capture involves making, with participants’ informed consent, video recordings of everything that happens on a user’s computer screen over a given period; in this case, during two of the five 90-minute project sessions. Protocol analysis is a procedure for obtaining participants’ verbal reports about their actions, thought processes and emotions whilst or after completing tasks. In this study, retrospective verbal reports were obtained by playing back the participants’ screen capture videos and asking them to explain what they were doing and why (Barden, in press).  Through the constant comparison procedure advocated for grounded theory (Corbin and Strauss, 2008 p259), this data was aggregated with that obtained through the more orthodox methods to reconstruct a strongly emic account (Brantlinger, Jiminez, Klinger, Pugach & Richardson, 2005) of how and why the students read and wrote online, the sorts of literacy practices that shaped literacy events, and how all this was underpinned by identity work.  In addition to these methods, a doctoral candidate working on his own, unrelated investigation of children and young peoples’ perceptions of their experiences of being researchers (Hughes, 2011) asked to collect Q-Sort data (Van Excel, 2005; Watts & Stenner, 2005)  from the participants.  Q-Sort is a systematic way of studying viewpoints, opinions, beliefs and attitudes, in which participants sort by ranking a carefully worded and selected set of statements into a quasi-normal distribution, with these “sorts” then subjected to a statistical pattern-analysis called by-person factor analysis. Having an independent researcher use statistical methods to explore my participants’ views of themselves as researchers on my project helped triangulate and add additional depth to inform my own analysis of their identity work.

The classroom setting

The empirical work for this study took place in a classroom in a sixth-form college in north-west England[i]. The five volunteering participants were a sample of convenience: had I not been doing this research, I would have been teaching them conventional literacy and study-skills anyway.  The participants professed interest in the project, and had a variety of experiences and knowledge of dyslexia. Three of the group had been identified as dyslexic through educational psychologists’ assessments earlier in their school careers. Two were formally assessed shortly after enrolling at the college. The five expressed different attitudes towards and purposes for online social networking. The collaborative research used a strategy of “scaffolded co-construction” (Lankshear & Knobel, 2003, p.180). This involved me as teacher-researcher and participant-observer, designing, facilitating and documenting the students’ largely self-directed online research into dyslexia.    The students’ regular “study support” classroom was reconfigured as “an inquiry-oriented learning environment that positioned students as active collaborators investigating their learning, personal responsibility, and construction of identities as self-sufficient learners” (Greenleaf & Hinchman, 2009, p.11; see also Coffield, 2008). The classroom thus combined with the group’s Facebook page to become an “affinity space” (Gee, 2005) for the collective endeavour of exploring interest in dyslexia. The space was  dissociated from institutionalised literacy norms, with “no requirements concerning ‘correctness,’ style or format” (West, 2008 p.588).

We worked together to co-construct a Facebook page over five 90-minute sessions. As teacher-researcher l initiated the project, helped set its direction and ensured progress was made. The students chose to construct a group Facebook page, recording their largely self-directed research into their freely chosen topic, dyslexia. The participants decided to use Facebook to explore and record ideas around dyslexia, hypersensitivity to sensory stimuli, disability and diversity. I encouraged them to bring their pre-existing “funds of knowledge” (Moll, Amanti, Neff & Gonzalez 1992; also Davies & Pahl, 2007: 119; Wellington, 2001 p.236 ) to the endeavour, and take the opportunity to link curriculum content to personal experiences, local knowledge and relevant artefacts of popular culture, such as songs, press articles and online videos. Over the weeks as the students pursued their own interests the page developed organically, with little direction from me. We had regular, spontaneous discussions about their learning as well as more formal weekly progress meetings.

Ethical considerations

A major ethical principle was that the students’ preferences and curriculum demands had to take precedence. This significantly influenced the timing of the project and some opportunities for data collection and analysis. For example, at points in the term coursework and revision had to take priority over research activity. Some students participating were under 18 years old. Having undergone formal diagnostic assessment for dyslexia, all were legally classified as disabled. Both these factors mark them out as potentially vulnerable and high-risk. Although I thought that participating was something they would enjoy and benefit from, before starting I warned them that people might post hostile comments on their Facebook page: one danger of SNS is that have the potential to reinforce stigma and stereotypes, owing in part to the way they unsettle the public/private distinction (Mallan, 2009).  I attempted to manage this risk by piloting the project using the closed SNS Ning, but like Moayeri (2010), found that students were reluctant to use this site. Instead, the participants were unanimous in wanting to use Facebook as a vehicle for promoting better understanding of dyslexia amongst their peers, and so were willing to accept the risk. They also had an explicit political agenda, set out in the aims they authored for the project, wanting to persuade the College to overturn its Facebook embargo by proving to senior management “that Facebook can benefit education.” As a practitioner I felt it was ethical to support the students in trying to make education work better for them.  All students gave informed consent for confidential audio and video recordings to be made. I used a dedicated Facebook profile for myself, isolated from my personal one, to maintain my professional identity.

Data Analysis & Presentation

The project generated a considerable quantity and variety of data (summarised in Table 1).These data were analysed using the rigorous, reflexive procedures advocated for constructing grounded theory (Charmaz, 2006). Essentially, this involves multiple iterations of ipsative coding of the entire dataset, moving from initial open coding through focused coding to inductive, thematic categories which offer explanations of all the collected data. Because of the large volume of my data, and because I felt I had already immersed myself in my data enough to have some inkling of the major emerging themes, I switched from manual coding to using NVivo9 at the focused-coding stage of the analysis. Waiting until this point takes account of the criticism that computer programmes are not sensitive or “clever” enough to do grounded theory analysis (Becker, 1993).  A final stage of theoretical sampling and integration analysis rendered three intertwined strands of identity work which underpinned literacy practices These categories and their interdependencies are elaborated in the subsequent sections:

  1. Developing individual dyslexic identities
  2. Developing a shared dyslexic identity
  3. Becoming experts

Table 1: Data summary

Data Type Number of Instances Volume of Data
Duration (mins) Words
Initial Interviews 5 130 19722
Second interviews 5 104 16615
Observation notes[ii] 5 n/a 11055
Video recordings 5 356 n/a
Video transcripts 10 n/a 11687
Wink recordings 10 20 n/a
Protocol analysis 7 n/a 1155
Q-sort 1 n/a 11333
Total n/a n/a 71567

Charmaz’s (2006) approach is reflexive and pragmatic, recognising “that the viewer creates the data and ensuing analysis through interaction with the observed” (p.273), and  demands sensitivity to one’s own influence on the participants and the analysis. Constructivist grounded theory attempts to give opportunities for participants to tell their stories in their own terms and to clarify their perceptions of their own lived experiences. In this sense, it is emic and ethnographic. Authenticity is sought, as opposed to positivist notions of validity. Indeed, Charmaz (2006) rejects the concept of validity, yet her methods for attaining ‘authenticity’ are so similar to those Silverman (2006) advocates for ‘validity’ that this debate risks being reduced to the level of semantics: both insist on the systematic and rigorous application of strategies for data collection, and for analysis of the entire data set. These procedures, together with the relatively naturalistic classroom setting (I had already taught the group literacy- and study-skills for two months before starting the project) go some way to addressing potential experimenter effects inherent in such a research design.

Figure 1 is a screenshot of the group Facebook page, which illustrates the kinds of contributions the students posted, and how these evidenced identity work. The top post is a link to research from the Dyslexia Research Trust, which  attempts to explain the visual distortions some people labelled with dyslexia experience when reading. The bottom post is a video which attempts to simulate these perceptual effects. In the middle is a YouTube video of the British stand-up comedian Eddie Izzard, who identifies as dyslexic and is performing a routine about dyslexia. This supplied the audio for a video the students produced, which is discussed later.

barden1

Figure 1: Screenshot of the group Facebook page

Developing individual dyslexic identities.

Participating in the group and contributing to the Facebook page was itself a significant signalling of a dyslexic identity for each individual: dyslexia is frequently a source of shame and my participants admitted as much, yet they publicised themselves as dyslexic to a potential global audience of 500m Facebook users. The actual size of the audience who joined the group was only around 70 people, but this is still a significant number to make a potentially stigmatizing disclosure to (Riddick, 2000). Early on Danny,  for example, talked about how he wanted to ‘smash’ a friend and fellow rugby player who had mocked him as a ‘cheat’ for being entitled to extra time in exams, and how he wanted to make people understand dyslexia ‘by force.’ Much of the students’ subsequent individual work during the project could be interpreted as them making sense of, and sometimes then communicating, their personal experiences of dyslexia. The motivation to make meaning through literacy was such that quite often the students would engage with texts that they would probably otherwise consider too difficult. As evidenced on the screenshot above, Chloe, for example, investigated the magnocellular theory of dyslexia (Stein, 2001) and undertook reading on the influence of chromosomes on literacy acquisition. In her post-project interview she spoke about “getting really nerdy” and “enjoying the sciencey part” of the research. In the context of the project, she was happy to engage with challenging academic texts she would otherwise have avoided. Likewise, Charlotte talked enthusiastically about an article from a Singapore Medical Association journal she had read (Lyens, 2002), which helped her understand the purported relationship between dyslexia and creative thinking. The article is written for clinicians, and demands some understanding of the psycho-medical domain and its vocabulary in order to be fully understood. Charlotte was a seventeen year-old Arts student. Despite our work earlier in the year on the nature and theories of dyslexia, she did not have the command of the subject-specific technical vocabulary anticipated by the author. Yet she was motivated enough to persist with the text, and then post a link to it on the group page, because it helped to answer her research question. In addition, the article resonated with her lived experiences,  and with the offline classroom discussions about dyslexic “geniuses”, dyslexic role models, and the group’s own perceptions of their being creative, independent thinkers:

“…I was just like oh woh yay!”

OB: How does madness promote genius do you remember adding this?

Charlotte: Yeah it’s the whole thing about dyslexics being able to be superhuman and um having like erm one of their senses being heightened…and like how a blind person has really good hearing and they can find a way around it like that but then we’ve got…certain things that are better for us…like being able to look at something completely different to everyone else…and see round the different ways around like think outside the box and stuff and yeah this one was quite long this one and this is one that you were like oh you’re reading this!

OB: Do you remember how you came across this?

Charlotte: Erm my question was something to do with advantages of being dyslexic or something and I think I just typed it into Google and something came up but…

OB: Okay yeah it is quite a tricky article but you were obviously you took something from it… how did you go about reading this article …I’m asking you what motivated you to read this…when you probably wouldn’t read usually something that was this difficult to read?

Charlotte: Well I think it is an actual experimental like write-up or something so I thought that would be quite an accurate look onto how dyslexics work and how other people with disabilities work…so I think it I was just like oh woh yay!

OB: So because it was, it had accurate information and would be a reliable answer to your question?

Charlotte: Yeah.

Charlotte’s choice of research question indicates a desire to make sense of her own experiences of dyslexia, and thus engage in individual identity work. Charlotte was a visually creative “alternative” Arts student, studying Graphic Design and Photography. The article she chose to read reported on perceived links between “madness”, “genius”, “powers of creativity” and dyslexia. It made positive associations between dyslexia and visual- and creative-thinking, and gave examples of “eminent people” with dyslexia (Lyens, 2002, pp4-7) who were thereby offered as potential role models.  The article thus spoke to Charlotte’s sense of self as a creative, visual-thinking dyslexic person. The research question, the overall tenor of the article and the specific role models given provided Charlotte with an opportunity to engage with re-framing work, developing an individual dyslexic identity that included “being able to be superhuman  [...] certain things that are better for us [...] the thinking like being able to look at something completely different to everyone else [...]and see round the different ways around like think outside the box…” Although positive, this re-framing does evidence a potential tension between developing an affirmative dyslexic identity  – of not being part of “the grey amorphous mass” of non-dyslexic people (Swain, French & Cameron, 2003 p.27) -  and reinforcing ‘superhuman’ disability stereotypes  which in turn perpetuate the Othering of disabled people (Barnes, 1992; Wendell, 2006). With hindsight, this tension could have been useful to explore with the group. Nevertheless, Charlotte’s reading here can be interpreted as an important part of her re-framing her dyslexic identity as something more positive for her.

This data also speaks to the other two elements of identity work identified in the analysis. The second identity in play is that of the group dyslexic identity. By posting a link to the article on the group Facebook page, Charlotte is contributing to the shared identity. She is also providing her peers (and wider audience) with an opportunity to undertake similar re-framing work and hence come to understand dyslexia in a more positive light. Charlotte’s account of her engagement with the article also shows that the third “becoming expert” identity is also in play. Charlotte positions herself as diligent researcher who is judicious in choosing what she shares with others. This is evident in her celebratory “I was just like oh woh yay!” when she finds an authoritative source that “is an actual experimental like write-up or something.” In asserting that she values “actual” science and “accuracy” in the learning she shares with others, Charlotte can be seen to be positioning herself as someone who carefully chooses only reliable information to pass onto others via the group Facebook page. She chooses “accurate” information believing that this is the best way to inform and help others, even if the information is likely to make challenging reading for her audience.

Developing a shared dyslexic identity.

The students coalesced into what Gee (2007, p.212) calls an affinity group: people “bonded primarily through shared endeavours, goals and practices.” Their endeavours to understand and communicate experiences of dyslexia, habitual Facebook use, and digitally-mediated literacy practices helped establish the participants as affinity group. I interpreted much of the off-screen and on-screen dialogue and interaction as the group bonding through the tacit co-construction of a shared identity. This shared dyslexic identity reciprocally shaped individual identities. It was established and maintained through participants sharing aspects of their individual experiences of dyslexia in mutually supportive dialogue. Paradoxically, the students wanted to be seen as ‘normal’ whilst simultaneously establishing and promoting individual and group identities which were explicitly Other. For example, in a meeting to clarify the students’ aims and objectives for the project, Charlotte asserted that “we are normal” – by which she meant not being “weird” -  yet at the same time “greater than everyone else” with “great brains.” Danny on the other hand, distanced himself from “normal” and “great.” Although playing partly for laughs, Danny identified himself as “not great”, a “freak” and a “black sheep.” Josh, echoed by Chloe, wanted to identify the group as “not generic”, again asserting a group identity of Otherness. This Otherness was reinforced by the way “normies” and “muggles” – non dyslexic teachers, peers and family  – were frequently described in hostile terms. Over the weeks, there was conversational thread expressing the anger and frustration they felt as a consequence of negative interactions with normies. The affinity group seemed to be working towards a complex shared dyslexic identity, seeking acceptance as “normal” whilst at the same time being “non-generic.” In line with social models of disability and inclusive perspectives on education, the group appeared to be calling for an expanded definition of “normal” which includes dyslexia and themselves, and recognises that “normal” embraces a wider range of differences than current popular perceptions allow.

The strongest conversational thread which ran through the weeks was the nature of reading and writing and how English orthography worked to disadvantage the participants. These discussions were rich and often insightful, as the following example shows. It is taken from a session when the students, at my prompting, were expanding on ideas for a short film they were planning, summarising what they had learnt so far. In the full discussion, the students drew on knowledge of self, family, genetics, biology, neurology, medical science and role models as they tried to decide what to write down to answer the question “What is Dyslexia?” In doing so, they co-constructed a collective dyslexic identity by acknowledging shared experiences. The stated purpose of this conversation is to generate script ideas for a short film the students made about what they learned from their research. Throughout this sequence, one of the group is mindmapping key phrases onto a piece of flip chart paper. This exchange therefore constitutes part of a literacy event, with the students developing digital literacy skills that will help them compete in the online attention economy (Alvermann, Marshall, McLean, Huddleston, Joaquin & Bishop, 2012):

Josh: Erm what it is what dyslexia is just put down what it is.

Charlotte: We don’t know.

Chloe: Learning disability.

Josh: To me what I see is I see dyslexia is a thing it’s the problems y’get. There isn’t an easy way to describe it without y’know usin’ the problems.

Chloe: They don’t know what the cause is yet so…

Charlotte: Learning disability can’t read write.

Chloe: It can be genetic.

Josh: It is genetic isn’t it.

Charlotte: Yeah I think mine’s genetic.

Chloe: Mine’s genetic.

Josh: I think my Dad’s got it.

Chloe: Me Dad me Nanna and me Great Nan.

Charlotte: My mum and my Grandad.

Josh: I think it well it is in my stepdad’s family he’s got it his dad had it and his son’s got it but no-one in the female side’s got it.

Chloe: That’s just chance.

Charlotte: Yeah because it depends on the mixture doesn’t it cos my brother’s not got it he is clever he got he’s got an artistic flair but he’s not got a design flair if you get me.

This data illustrates the students sharing aspects of their individual experiences, in this case families and genetic inheritance, to construct a group dyslexic identity. Chloe and Charlotte talk of “my” dyslexia, before the group exchange information on how dyslexia has passed through their family lines. Then Charlotte notes how her brother is not dyslexic, and she seems to decide that this explains his lack of design flair. This remark helps maintain a group sense of Otherness, and with its undertone of superiority (West, 2009), hints at positive reframing of dyslexia (Gerber, Reiff & Ginsberg; Tanner, 2009).  The discussion shows the group constructing a shared understanding of dyslexia (”a genetic learning difficulty that means you can’t read and write”) and hence a shared identity (”we all have family members with dyslexia, are dyslexic, and find reading and writing difficult”). Note how they do so in a mutually supportive way, with no arguments or significant disagreements. Through this sort of dialogue, which is prompted by a writing activity, the students expanded their collective knowledge of dyslexia, which in turn helped them develop their identities as budding experts.

Becoming ‘experts

I detected a paradox in the student’s discussions and presentations of identity. When asked directly in their interviews, the students tended to try and give the impression that they “weren’t bothered” or didn’t have “strong feelings” about their own dyslexia. However, the anger and frustration expressed elsewhere in their conversations and interviews towards their peers, teachers and former schools is at odds with the emotional disinterest they professed in relation to their own dyslexia. In her pre-project interview, Chloe admitted that curricular literacy demands left her “feeling down and defeatist.” This contrasts strongly with her later claim that “I’ve never had never had an issue with being dyslexic…I never sort of had any major feelings towards it I still don’t.” Also, it is difficult to see why the group would be so keen to help others unless they felt the difficulties and challenges dyslexia presents were significant.  The students’ self-determined aims for the project included:

  1. Making people more aware of dyslexia and its effects; and
  2. To find ways to overcome dyslexia, and prove that the participants and other people with dyslexia aren’t stupid and are normal.

Throughout the weeks, the word “help” was used very often, with the group keen to position themselves as “helpers”, informing others about dyslexia. This suggests a developing sense of agency through writing and negotiating the self as an expert (Davies, 2006), with the students beginning to value the literate contributions they could make (Greenleaf & Hinchman, 2009). Of course, the students were already experts on their own experiences of dyslexia, but they were able to expand their understanding of other people’s experiences and perceptions of dyslexia, as well as the theoretical and scientific understanding gained through their research.  The Q-Sort data indicated that as well as being able to take on and exploit identities as ‘experts’, the participants were able to take on identities as ‘young researchers.’ Josh acknowledged that as their teacher I “went out on a limb to trust us with the use of Facebook.” This led to an appreciative sense of being involved in what Charlotte described as “a more grown-up way of working.” The Q-Sort data suggested that the five students reacted differently to their independence and research role. Mohammed felt satisfied with being involved with the project. He saw it as very teacher-led, but this did not stop him enjoying the activities. Through his research, he was able to become a more effective learner. For example, he changed his revision strategy in light of what he learnt about dyslexia and reading:

Yeah I do I feel I different now because before I just used to like read the page and then just write cover that up and write again but after I come here I changed my method of revising. I used to like just skip on my reading and then put it on mind maps or like structure the notes I have differently than I used to do before and I think it’s changed the way I revise now.

The Q-sort data also indicated that the students felt they were more-or-less equal partners in the project, but would sometimes have preferred greater involvement in decision making.   There was a sense that a different and more collaborative way of learning alongside adults was possible and even preferable:

OB: Danny, what are your thoughts about being involved in the project as a whole?

Danny: I thought it was good because y’get other people’s point of view on it and it’s not something boring either it’s not like a boring project it were quite good quite interesting.

OB: Why did you like it do you think?

Danny: I don’t know because we got to act pretty stupid for a bit y’know we weren’t taking it too seriously which were the thing like none of us took it proper serious…erm we did take it serious but not like we had a laugh with it as well so it just made it more enjoyable.

OB: Okay when you say taking it seriously d’you mean you think you think learning in College is generally too serious or d’you mean people tend to take dyslexia and deal with it in a really serious boring way?

Danny: No I mean like some people instead of laughing and joking about it they’d just like read the notes and be dead clear and boring and it’s not like that I don’t think and yeah College is boring the work it’s just it is too serious.

Danny’s comments are indicative of the way the students felt a sense of legitimation, ownership and control, and this sense of “grown-up-ness” was another motivating factor for their literacy and identity work. They also hint at the preference for self-directed learning through exploration, and of the importance of affirmation, partly through playfulness and humour: “we did take it serious but we had a laugh with it as well.”

Discussion

My analysis of the data suggests that, contrary to popular beliefs about dyslexia, these students were highly motivated to learn through literacy. Away from the constraints and expectations of the formal classroom and curriculum, the students were able engage in three important kinds of identity work, resisting and challenging dominant power/knowledge regimes, and mediated by their multiliteracy practices on Facebook. One of Josh’s first posts to the group Facebook page was an image of Professor Xavier from the X-Men movies. To the image, located through a Google search, he added the caption “Professor X is disabled and he’s epic” (Fig 2). Unfortunately he chose to work with a rather low-quality image but the message is clear:

barden2

Figure 2: Josh’s Professor X image

On one hand, the X-Men movies and the character of Professor Xavier can be read as deeply problematic in the way they perpetuate stereotypical views of disability (Berube, 2005). On the other, for Josh, creating and publishing this multimodal text was an affirmative expression of a dyslexic/disabled identity. His picture is just one of the wide variety of multimodal texts the students produced and interacted with: text-only compositions, text-image compositions, “poached” (Jenkins, 1992; also Hughes, 2009 & Williams, 2011) and “mashed” texts and text-image compositions, original graphic and photographic artwork, and original videos. These texts served, explicitly or tacitly, to communicate aspects of the students’ dyslexic identities. They also evidenced  playful,  new literacies learning (Davies, 2009; Veater, Plester & Wood, 2011; West, 2008). Josh’s picture  exemplifies the way many contributions and discussions were characterised by a somewhat defensive humour.  This evidence supports the contention that issues of identity are central to motivating dyslexic students to learn through literacy in Web 2.0 contexts (Greenhow, Robelia & Hughes, 2009; Hughes, Herrington, McDonald & Rhodes, 2011). The reach and affordances of digitally-mediated social networks are contributing to the state of flux in contemporary literacy practices. However, as Williams observes (2008 p.686):

What will not change, however, is the importance of identity in terms of literacy practices. If anything, new literacies reveal to us how important it will be to continue to consider how people position themselves in changing cultural contexts and how that influences their ability to communicate with others.

Consistent with the wider literature, the evidence suggests that the participants began the study with relatively low self-esteem and a sense of inferiority. This is evident in, for example, Chloe’s admission of “feeling down and defeatist” when confronted with some reading her peers seemed to have no difficulty with; in the way the participants associated dyslexia with deficiency and stupidity; in the way they saw their efforts at literacy as being childish and unsatisfactory; in the frequent use of humour as a defence mechanism; and in the oft-stated desire to help other students with dyslexia. By inhabiting ‘projective identities’ (Gee, 2007) as a ‘superhuman’, ‘nerdy scientist’ ‘creative genius’, or ‘expert-helper’ the students were able to reposition and affirmatively reframe their identities as “thriving, literate, intelligent human beings with important contributions to make” (Greenleaf & Hinchman, 2009, p.4).  In other words, the temporarily transformed classroom and the group Facebook page provided sites were the students were able to resist the dominant power/knowledge regime which usually casts them as failures or at least deficient in some way (Foucault, 1975). This is significant for four important reasons. Firstly, this type of inquiry based learning, solving personally meaningful real-life problems is known to be effective and appealing to many students labelled as dyslexic (Mortimore, 2003; Reid, 2009). Secondly, learners who perceive themselves to be capable and valued despite the difficulties associated with dyslexia, and who are able to envisage themselves as successful, tend to be more successful than those who don’t (Burden, 2005 & 2008; Mortimore, 2003). Thirdly, inhabiting and reflecting on projective identities in a safe and stimulating educational environment is a way of provoking active critical learning (Gee, 2007), in this case for soon-to-be undergraduates and “budding professionals” (Willett, 2009 p.14). Such learning is crucial if education is to involve students exploring ways of becoming and ways of being scientists, researchers and the like, rather than relying on simple transmission and drill-and-skill pedagogic models. Fourthly, at the end of the project, I showed the College Principal the stop-motion Lego video the students had made and posted to the Facebook page to summarise what they wanted to say about dyslexia (https://www.youtube.com/watch?v=1WA7ddfKp3E).  I explained how I saw it as evidence of the students learning through literacy, even though they saw what they were doing as “making a video.” As a consequence, she suggested convening a group of teaching staff to explore ways of exploiting social networking in the College for educational gain. Obviously, my position as a teacher will have had influence here, but the Principal would not have made her suggestion without seeing some value in the students’ work. She contacted them individually afterwards to thank and praise them for what they had done. The ability to influence your Principal and College’s approach to teaching and learning is, I would argue, a potent signifier of agency for any student, and moreso for a student who is from a traditionally disadvantaged educational minority.

I interpreted there being three conditions which fostered motivation to engage in literacy events, potentially with a challenging text or for a prolonged period: when the student had an inherent interest in the topic; when the student was seeking to develop further understanding of their experiences and/or self (the text content resonated with lived experience); and when the student was seeking (consciously or subconsciously) to communicate something about themselves. A contemporary inclusive literacy pedagogy could cultivate these conditions to capitalising on students’ intrinsic motivation, perhaps through ensuring students have access to a range of appropriate texts, choice and control, and critical awareness of different types of text and their own abilities. Designing a learning environment which enable students to positively reframe their ability to read would be one potential way of mobilising these principles.

I found it helpful to conceptualise Facebook as an “affinity space” which prompted active, critical learning through the literacy-based projective identity work done by the students (Gee, 2007). In such spaces, and with technologies and literacy practices changing, teachers may wish to consider approaches which fit with social-constructivist digital epistemologies (Dede, 2008; Kress, 2010). Maintaining the “building” metaphor, such approaches may cast teachers as designers or architects of learning experiences, scaffolding and framing collaborative tasks within affinity spaces. The primary role of the teacher in such settings may be characterised as facilitator and mediator (Somekh, 2007), providing direction, challenge, and access to the relevant technology (Davies, 2009). In this instance, the group Facebook page can be seen as a sort of collaborative blog (Davies & Merchant, 2009; Mills & Chandra, 2011). Its construction suggested two pedagogic principles similar to those observed in other blogging contexts. Firstly, play and playfulness. Much of the interaction was characterised by humour and playfulness. The students often posted what they described as, for example, “hilarious” pictures. They also “played” with different technologies including Powerpoint, digital cameras and video-editing software in the process of composing their texts. Secondly, it has been argued that blogging involves learning in a distinctive way: “read-write-think-and-link” (Richardson, 2006 cited in Davies & Merchant, 2009 p.88). The evidence from this study suggests that collaborative blogging is a literacy practice that can reciprocally and positively shape identity whilst developing collective subject knowledge and critical literacy skills (Davies & Merchant, 2009). For example, an extensive account of the students developing awareness, through this project, of the way orthographies and literacy norms and practices are culturally and temporally situated is given in Barden (2012).

The discourse of dyslexia has long been dominated by talk of deficits. Perhaps we now need to think about developing a literacy pedagogy which is neither predicated on deficit and failure, nor heroic stories of “conquering” literacy difficulties (Williams, 2003). Instead, it could recognise an expanded definition of “normal” and that every student has their own individuality, abilities and aspirations, reflected in different learning preferences and pace. In doing so, it might have to take into account stereotypical representations of disability in mass communications media; exploring ‘superhero’ characters might be one way of doing so (Dyson, 1997). The multiliteracy affordances of digitally mediated social networks like Facebook, coupled with the motivating identity work they precipitate, suggest they could have a significant role to play in such a pedagogy.

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Biographical Statement

Owen Barden is a lecturer in education, special educational needs and disability at Liverpool Hope University, Liverpool U.K. He is a core member of the university’s Centre for Culture and Disability Studies. Current research interests include changing conceptions of and relationships between literacy, technology and disability.


[i] Sixth form colleges are important stepping stones between high school and university in England and Wales. They almost exclusively teach 16 to 19-year-olds on academically demanding A-level programs which are generally a prerequisite for university entry.

[ii] This refers to contemporaneous fieldnotes later augmented by video observation.

Halvdan Haugsbakken and Inger Langseth

Published Online: July 5, 2014
Full Text: HTML, PDF (512 KB)

Abstract

This article argues that a new research trajectory in the Connectivism debate should be open to the K-12 system, and that education should consider the Web 2.0 application YouTube as a pedagogical tool in learning. We aim to show that YouTube facilitates students’ self-organised learning in informal and formal education. YouTube is potentially a meaningful tool that teachers can use to enhance students’ competences and digitalise classroom practices. This relates foremost to how YouTube content has the potential to trigger social dynamics that activate students’ capacity to connect sources of user-generated content to cognitive awareness on a given concept. When given the opportunity, students can use this competence in formal educational contexts. This ability, we argue, is partially self-regulated by digitally skilled students, and teachers can direct the students in an academic direction when scaffolding the literacies involved. The article is based upon research carried out in a vocational class in English at secondary level in Norway.

Keywords: YouTube, youtuber, to youtube, language learning, audio-visual literacy, connecting strategies, engagement, participation, and self-organised learning

Siemens’ (2005) Connectivism: Learning as Network Creation and Downes’ (2005) An Introduction to Connective Knowledge, have received considerable attention among scholars interested in the relationship between learning and new technologies in higher education. The works have introduced a new learning theory for the digital age, sparked an interest for MOOCs, and initiated the emergence of a new research discipline, Learning Analytics. Connectivism is also met with criticism, claiming that it is not different from older theoretical approaches. Critics also argue that the theory is – under-theorised and lacks empirical research.

We call for a new direction, due to the fact that Connectivism has mainly been discussed in the MOOC hemisphere. Connectivism should open a new research trajectory in educational systems at the lower levels, where most learning takes place today.  New social media user patterns among students also take place there, not only on turf known at universities. We are interested in applying two concepts related to Connectivism: self-organisation and learning as connections, which we frame as our connectivist approach. We analyse these concepts in relation to the social media platform YouTube and new emerging user patterns among students, who use YouTube on an everyday basis.

In this regard, the main goal of this article is to link aspects of Connectivism to educational research on YouTube, and we believe that this can add new insight to the debate on digital learning. We will show that YouTube videos can facilitate (1) students’ self-organised learning, (2) students’ connection between sources of informal and formal content, and (3) that there is a need to link the predominantly text-based approach to literacy to audio-visual literacy. Our objective is to exemplify this in a case study, showing how a class of Norwegian 18 years old vocational students, studying to become carpenters, uses YouTube content outside school contexts to learn about social practices that interest them, and how this connects to formal learning settings[i].

First, we account for the theoretical framework. We present important definitions and stress that a connectivist approach is needed in current educational research on YouTube. Second, we account for the use of our methods and data samples. Third, we present our data analysis, which establishes that YouTube use is a new social media user pattern among adolescents. In the analysis of student user stories, we show how students use YouTube content in informal learning contexts, as well as a vehicle for formal learning as part of a classroom setting.[ii] Fourth, we discuss the implications of our research, and see this in relation to addressing audio-visual literacy as a new competence in teaching and learning. Finally, we make some concluding remarks.

Theoretical framework – A connectivist approach to YouTube

Our theoretical approach is inspired by Connectivism. For the purpose of clarification and delimitation, we define some key concepts. Connectivism is defined as “the integration of principles explored by chaos, network, and complexity and self-organisations theories” (Siemens, 2004:4). The premise of chaos is that meaning exists and learners must discover connections and patterns of meaning in order to learn. Chaos recognises the network theory principle that everything is connected to everything (Siemens, 2005). As Downes (2006) argues: “to ‘know’ something is to be organised in a certain way, to exhibit patterns of connectivity. To ‘learn’ is to acquire certain patterns” (ibid.:2). Siemens (2004) theorizes that learning consists of connecting nodes, and that learning is the existence of nodes. The premise of complexity is that nodes exist both in the individual and as distributed knowledge online (Siemens, 2005).

The connectivist approach, as we see it, is that learning as connections happens when pre-established connections between nodes are activated – sending, receiving or forwarding information – in a short space of time, involving technical skills and critical thinking to judge the quality of the work process. Siemens defines self-organization as “the capacity to form connections between sources of information, and thereby create useful information patterns” from random initial conditions (2004:3). Siemen argues that self-organization is vital to the learning process. The premise of self-organisation is that nodes can take on a variety of modes of literacy. Connectivism includes certain interesting features in self-organisation: curiosity, creativity and randomness, and connections: concept learning and modes of literacy, which seem to explain aspects of social media use among students.

Connectivism evokes debate in different research streams. One trajectory forms around MOOC scholarship. Ebben and Murphy (2014) argue in their review that MOOC scholarship is characterised by different themes. Early research from 2008 to 2012 investigated the cMOOCs and argued that Connectivism was characterized by experimentation, innovation, and investigation of learning effectiveness. Canadian scholars fronted the work. From 2012 to 2013, Ebben and Murphy (2014) suggested a shift to behaviourist pedagogy with the deployment of xMOOCs, a work developed by U.S. based elite universities and start-ups. This era generated the discipline of Learning Analytics. MOOCs raise many organisational questions relating to university matters.

Another trajectory relates to the theoretical foundation of Connectivism. Early criticism maintained that it was no different from older learning theories (Kop & Hill, 2008). One main disagreement, which resides in fundamental epistemological approaches to learning, relates to what extent learning happens in the mind of the human and whether it can be attributed to the connecting of pieces of information embedded and transpiring from social structures like social networks outside the human mind. In recent criticism, Clarà and Barberà (2014) maintain that Connectivism has psychological and epistemological challenges. They (Clarà & Barberà, 2014) argue that it does not adequately conceptualise the role of agency, oversimplifies the meaning of social interactional approaches, and does not offer any framework that can explain learners’ concept development and how to apply the methodology in education.

We argue that an unexplored trajectory is how Connectivism can be applied in the context of secondary education. It is important to explore this territory, as connectivist orientated scholars are still locked in the domain of higher education. We pinpoint this aspect, due to the fact that schools across national educational systems are developing into IT networked organisations. This is attributed to social processes influencing educational systems; the increase in students’ private social media consumption and that educational authorities foster laptop and IPads as part of educational policies to increase students’ digital competence. Consequently, classrooms develop into material IT networks that rearrange the social situation in which most teaching takes place. This signals the need to push Connectivism in a new direction.

We argue for a connectivist approach to educational YouTube use and practices in K-12 systems, especially the exploration of concepts like self-organisation and learning as connections. Use and research on YouTube is growing. A content analysis in 2010 listed 188 referred articles and conference papers on YouTube (Snelson, Rice & Wyzard, 2012:120). International experts concur that more studies on how users interact, and how to explore “the manner in which YouTube intertwines with societal, ethical, political and commercial interests” (ibid.:129) is needed, as well as the need to uncover “the nature and quality of video content” (ibid:129).  The earliest research on YouTube connected to education dates back to 2007 (cf. Burden & Atkinson, 2007). From that year onwards, the number of studies increases. Certain studies are characterised by what we call “critical pedagogy”. They have a theoretical approach and contain analyses of YouTube as a learning tool in relation to media activism (Kellner & Kim, 2010), intertextuality (Adami, 2012) and globalisation (Kenway & Fahey, 2011). Researchers have explored how YouTube can be part of learning regimes to foster learner autonomy (Hafner & Miller, 2011), and language learning (Ghasemi, et al., 2011).

Studies demonstrate how YouTube can activate students’ engagement (Callow & Zammit, 2012) and learning strategies. Studies show that exposure to video-content enables students to better retain a course syllabus (Chtouki, et al., 2012), fosters learner autonomy (Hafner & Miller, 2011), facilitates the retrieval of web content (Hrastinski & Aghaee, 2012), encourages music teaching and learning (Kruse & Veblen, 2012) and uploading and video sharing (Mohamad Ali, et al., 2011). YouTube has been connected to “multimodality”, showing that students watch and discuss video files just like any other text used in education (Callow & Zammit, 2012; Chun, 2012). Research also stresses the potential benefits and pitfalls in education. Researchers also argue that YouTube can be used in social studies and is a positive teaching resource in elementary classrooms (Jones & Cuthrell, 2011). Moreover, YouTube is found to have the potential to create mental models (Krauskopf, et al., 2012), to be a resource in open education as videos in the classrooms (Tan & Pearce, 2011) and to have a great potential in foreign language teaching (Terantino, 2011). We also find research that has identified new user patterns among students. Such studies have emphasised how YouTube videos can be remixed to learn about civic action (Dubisar & Palmeri, 2010) and can be used in large classes to personalise learning and improve conceptual understanding in chemistry (Franz, 2012). We also found studies that explored how YouTube has been used to create student motivation (Lee & Lehto, 2013), and as a tool in music education (Kruse & Veblen, 2012; Waldron, 2012, 2013; Webb, 2010).

Methods and data sample

We base our analysis on qualitative methods anchored in a social scientific research tradition. The data sample builds on one English class of 15 students in their second year of vocational studies at a secondary school in Trondheim, Norway. The students’ motivation in English, which is obligatory, is generally low, even though they are at level B1/B2 (COE, 2001).

The data was collected from August 2011 to May 2012. We used different qualitative methods in triangulation: (1) semi-structured interviews with the students, (2) passive observations in classrooms, (3) teacher’s logs, and (4) student produced texts in formal contexts. We interviewed 11 of the 15 students. Six interviews were completed between the researcher[iii] and the students, five in pairs, while one was done individually. The interviews lasted from 30-60 minutes. All interviews were taped and transcribed.

The observations took place every week for 90 minutes following the school’s calendar, and the researcher took notes from the lessons. The teacher wrote a log that was made available to the researcher. The students’ texts were collected through the school’s LMS. The students, the teacher, and the school administration signed a letter of consent to participate. After the data gathering, all data was coded  using the constant comparative method (Strauss & Corbin, 1990; 1998). This method of analysis is used to code and categorise data in order to identify local concepts, principles, structures and processes.

Data analysis – results and findings

In this part, we will explore the concepts of self-organisation and learning as connections in a connective approach to learning and give detailed empirical examples. The following data analysis will show that short YouTube videos can be used to trigger self-organising and connecting activities, both in informal and formal learning situations. The first part establishes YouTube as a digital space that the students regularly visit when online. We illustrate this by showing a collection of nodes of information drawn by the students themselves. The second part focuses on how the same students use YouTube to self-organize their learning in informal learning situations. User stories show how the students use YouTube to learn to play a musical instrument and to play games. The third part argues that YouTube videos can be applied as a vehicle for formal learning. This part demonstrates how the students in the English class retrieved YouTube videos and applied the content in a self-organised social setting in order to learn more about extreme sports in the English-speaking world, as part of a curriculum based and goal-driven activity initiated by their teacher.

Part I: The students’ network of nodes

In one of the English lessons, the teacher asked the students about their online networks and their digital user patterns. The aim was to detect areas of interest to be used in future lesson designs. The teacher instructed the students to draw the websites they visited every day as nodes in a network and to describe the usefulness of websites  in a few key words. She also asked them to rank the nodes, on a scale from the most to the least important ones. We used this task as a method to capture students’ digital user patterns: which web sites they interacted with and why. The students’ networks show that they have a narrow set of nodes, often ranging from 3 to 7 web sites that they visit every day. Some sites are recurring. Norwegian newspaper sites, e-mail systems, and common social media sites, like Facebook. Other sites like the school’s LMS and digital sources related to subjects or their vocational training, are absent in the data. Also, we see that YouTube and gaming sites are prominent features, and they are to a large extent in English. Seven of the fifteen students rank YouTube as an important site that they visit every day. We present three examples of students’ network of nodes.

haugs1

Figure 1. Example of student network of nodes

haugs2

Figure 2. Example of student 2 network of nodes.

haugs3

Figure 3. Example of student 3 network of nodes.

Part II: The students’ network of nodes in informal learning

Since YouTube opened in 2005, a variety of internal subgenres have emerged. These appear as suggestions when you type in a search word in the search tool bar. One subgenre is “YouTube tutorials”, a kind of do-it-yourself (DiY) instruction, which is based on traditional apprenticeship. The common feature is that a “master”, claiming expertise in a field, shares a video containing a step-by-step instruction about how to carry out an activity, with an anonymous online “apprentice”. The up-loaded tutorials are short and behaviouristic, covering a range of topics. Many videos last from two to five minutes, and they can be both easy and difficult to make. Among other devices, YouTube’s own system for video-production can be used. The videos are often produced as screen casts with a voice-over, or videos are recorded at a location where some sort of activity is going on. The tutorials take place in an informal and socially networked context, and they represent an emerging peer-to-peer-sharing “educational” network, which is scarcely described in the research literature on YouTube.  The majority of tutorials are in English.

YouTube offers a range of small music lessons made by amateurs, semi-professionals and professional music instructors. In the videos, they explain and show some of the basic skills, like how to play a cover song, different types of finger-picking techniques, chord progression, etc. As music theory is transformed into practice, the tutorials offer guitar playing for those who do not know how to read notes. The audio-visual tutorials contain a graphic display of the guitar tablature, the chords used in a song, and suggestions for a musical arrangement. Videos also allow learners to replay instructions. Songs are deconstructed and arrangements are visualised in very small details with accompanying explanations (audio), making it easier to learn to play a musical instrument. In an interview, one male student explained how he used two nodes – Ultimate Guitar and YouTube – in his network to learn how to play the guitar:

I’m on Facebook, for example, I find some videos on YouTube. I want to learn a song. I go to Ultimate Guitar, learn the song. I only go to a web page, so you can download the tabs or the chords. You can find everything. All kind of music you can find on that page.”

Three other students used YouTube tutorials to improve their online gaming, one of their favourite hobbies. In the interviews, they revealed how they extensively consumed YouTube tutorials in order to learn to play World of Warcraft, Halo and Counter Strike. There is a good reason for employing tutorials. Gaming is a massive undertaking, more than just a random pastime activity. The students can play for hours. It is also a complex social practice, which involves a long learning process and a steep learning curve to improve. Amazingly, YouTube tutorials are a web 2.0 service the students use to close the gap between their actual level and the level they want to achieve in the game. Experienced gamers record and show off their great triumphs, nice moves, and how they uncovered a game’s secret level in YouTube tutorials. Less experienced gamers employ these tutorials to learn or copy the tactics or tacit strategies of a particular game in order to ease the learning curve of a game. Some students referred to YouTube tutorials as “guides”.

Compared to learning the rules, tactics and strategies on your own during the gaming activity, YouTube tutorials offer shortcuts to the mastery of a game. YouTube tutorials reveal a cultural value system among gamers, which is centred on aesthetics, personal taste and a sense of humour. This seems to serve a learning purpose.

Student:                                 I use it very often. Every time I am at my PC, its YouTube, Twitter and Facebook.

Researcher:                         What’s so great about YouTube?

Student:                                They post a lot of funny videos, like famous people. I play PlayStation. There are many who make “commentaries”.

Researcher:                         What is that?

Student:                                They play and comment, find errors in games, and they make fun of it. If a FIFA player has only one foot. They forget sometimes to make a foot of a person.

Researcher:                         They point out errors?

Student:                               Yes, they find errors in all games.

Researcher:                        And then they make a gag out of it?

Student:                              They make it so that it is funny, while they comment on it.

This student indicates that he is using what experienced gamers publish in order to uncover design flaws, thus providing hints to the existence of an aesthetic value system, not dissimilar to the aesthetic belief system seen in the hacker culture. Hacking is often about finding technical flaws in computer systems, something that the student points out in his consumption of YouTube tutorials. Flaws in the system, refers to quality, the rating of someone’s work.

Another student revealed a personal value system underlying this production of YouTube tutorials. He uploads YouTube videos to show off to his friends, and not primarily for educational purposes. He evaluates his videos according to some inherent standards of content creativity, curiosity and quality, in order to decide whether to share them online:

Student:                              I did it very much before, when I gamed. For example, if I did something crazy, I edited them and posted them on YouTube. It was a simple way of sending and showing them to my buddies.

Researcher:                       What did you make?

Student:                              You know what CS is?

Researcher:                       No.

Student:                              It is Counter Strike. It is an army, shooting type of game. You play in teams. For example, we are five buddies, who team up against five other buddies. If you are alone, killing all five of them, it is                                                        very good. Then you could take the video, which shows how you killed all five of them. If you kill them in a good way, you can post videos of that. And you add the happy music.

Researcher:                       So, you created a video-collage?

Student:                              Yes.

The last transcript from our interviews, demonstrates how YouTube tutorials are used in social networks in a larger socio-cultural context, involving more than just one person:

Student:                            Most times when new games are out, all my mates meet to find out more about it. We often sit and look on YouTube to see new things. It happens when we have to learn that and that, and that’s the                                                     way to do it. It’s really that way we use YouTube.

Researcher:                     So you’re sitting around and talking together?

Student:                            Yes, we are discussing.

Researcher:                    It seems to very useful? It teaches you a lot?

Student:                          I learn a lot from it. I think that I couldn’t have been able to play, if it wasn’t for YouTube.

Part III: The students’ use of YouTube nodes in formal learning

In a later English lesson, the teacher introduced the students to the concept of “crossing boundaries” using “extreme sports” as a prompt. The aim of the lesson was to develop the students’ knowledge of the English-speaking world in line with the curriculum plan for English in the Knowledge Promotion (Utdanningsdirektoratet, 2012). She used three short informative texts about zorbing, heli-skiing and bungee jumping in a jigsaw reading. The students were divided into groups of three and instructed to read one part each, and then share their knowledge. The content seemed to spark an interest, since, for once, they all read their texts in silence.

In the following classroom discussion, the students to reflect upon where, when and why such activities take place, and who would engage in such sports. The questions created a rather lively debate in Norwegian and English, and gradually, the students “owned” the discussion, in the sense that the debate went on among the students without the teacher’s intervention. In this process, first one, then several students made use of their laptops, which are constantly available to all students on their desks. They opened YouTube on their own initiative, ran a quick search, selected a video and then invited other students sitting next to them to watch the videos with them. They also opened other websites that they connected to the topic, where for example accidents were described. These videos are represented by Figures 4 and 5.

They discussed and reflected upon the questions that were initially posed by the teacher in groups in front of the laptops. The students were divided about whether to risk trying these extreme sports, and they localised different sports to different locations and cultures all over the English-speaking world.

The first feature in this case is concerned with connectivity. The students used their existing network of connecting nodes to retrieve information that served as input in the discussion in the classroom. When the students connected the concept of “crossing boundaries” in written text to audio-visual texts retrieved from YouTube, they showed the capacity to form connections between text-based and audio-visual information in useful information patterns. In texts (meta texts) retrieved from the class’s LMS, several students emphasised their preference for audio-visual over written text. One student wrote: “YouTube is easier than reading” and he goes on to explain this phenomenon:

“On YouTube you can see pictures and movie clips and at the same time you learn. It can be a lot easier to search on YouTube than in an old book. I think YouTube makes working with the subjects much easier and a lot more fun.”

haug4

Figure 4. Students’ selection of YouTube videos used to inform other students.

haug5

Figure 5. Students’ selection of YouTube videos used to inform other students.

Another student writes: “When I’m working at school, I can use YouTube to search for things I haven’t done before, and learn some things from a movie on YouTube”. Yet another student writes: “The videos on YouTube can be based on drama, sketches, music, movies, knowledge, and so on that we read about at school”. These quotes indicate that students have developed cognitive connecting strategies for content-based learning, that they have developed patterns of connectivity between textual and audio-visual contexts and that they are bridging informal and formal learning. Our data suggests that YouTube has the potential to function as an agent for connectivity in concept based learning in formal education.

The second feature concerns students’ self-organisation. At one point, the researcher observed four reorganised groups of students engaged in watching videos and discussing the prompt that they had received. The teacher joined the groups on equal terms with the students, and worked as an encourager in the sense that she asked higher order questions. The students activated their self-organising strategies when they made use of YouTube in order to add additional information in a different mode of literacy. They searched for information in videos that had the potential to broaden and deepen the understanding of the concept that they had been introduced to in written texts (cf. figure 4 and 5). They demonstrated their capacity to reorganise heterogeneous and pedagogical group settings in groups based on curiosity, creativity and personal interest, much in the same way as they described doing in informal learning.

Students also demonstrated self-organizing skills when they narrowed their search down to videos that were relevant and acceptable in the educational context. One student wrote the following in his meta-text: “At school I use YouTube to get information related to things we are doing, to get a better comprehension of what the subject is all about”. Other students wrote:

“When you are at home you can search for whatever you want, but as long as you are at school or work, you can’t search for videos that are not suitable for the situation. (…) When I’m at school, I often search for what the theme is at school.”

“I think YouTube is a great website to learn from. If I wonder about something, I just search on YouTube, and I will find out of that. I use YouTube at school to learn. I like better to see something.”

These quotes suggest that students are self-organised, that they are highly aware of YouTube as a tool for learning, that they make use of YouTube regularly in school and that they are conscious about forms of use in educational contexts.

A fourth trait in this case is concerned with critical literacy. Students are aware of the nature of the user-generated content that they are exposed to. One student wrote:

“There are not all the videos on YouTube that are great. Some videos might be fake, horrible or incorrect/wrong. You should have a basic knowledge of how to use YouTube. If not, you might end up watching a midget getting beating when you were trying to find a video with an interview of Barack Obama.”

Another student wrote: “I can use YouTube in my work if I need to, but I can’t be sure that what I see is right, so you need to watch at your own risk”. Yet another student wrote:

“There are people taking videos where they are bullying other people, this is a problem YouTube is trying to solve. People can report videos they think are offensive to others. This is one big negative effect of YouTube.”

These quotes indicate that students have developed a conceptual understanding of critical literacy from experience with YouTube videos. They reflect upon the validity and value of the information they retrieve and the harm it may cause, maybe more so, we are tempted to say, than when they are presented with information in textbooks in educational contexts.

After some fifteen minutes of self-organised activities in reorganised groups, three students wanted to present one video to the whole class on the projector. The students connected their laptop to the Smart Board and reported on a fatal zorbing accident that had happened the previous week. All students were involved in watching the video. Going from chaos to classroom discussion, the teacher gave the lesson a clear direction through reflective questioning about students attitude to “crossing borders”: risk taking in terms of adrenaline kicks, lethal danger, courage, bravery etc. in different contexts. The discussion also included social situations, cultures and customs in the English-speaking world. All students were involved and eleven students contributed willingly to the classroom conversation in English.

The fourth trait in this case is connected to social learning. The students shared and discussed their digitally retrieved videos in small self-organised groups and as a class. The teacher cannot plan such student-initiated activities beforehand, and handing over authority to students can be experienced as losing control over the class (Sandvik et al., 2012). Chaos is, however, a necessary and fruitful stage in learning processes associated with connectivism (Siemens, 2010), as long as there is a clear direction. Collective self-organisation was initiated when one group of students shared their video with the whole class. In connectivist theory, this is described as sharing new information after having created new “nodes” of information (Siemens, 2004). The students handed back some formal authority to the teacher in the following classroom discussion. She could then ask follow-up questions in order to challenge her students at higher cognitive levels. This is also in line with connectivist theory, which stresses formative feedback on new nodes presented by the participants in a network.  If these processes are repeated, they might form patterns of self-organization in formal educational settings, based on written and audio-visual information in a mix of teacher and self-organised learning. Some schools in Norway have closed down social websites in order to reduce complexity in formal education, thereby missing out on students’ self-organisation, curiosity, creativity and engagement.

In the last sequence, the class evaluated the lesson, with reference to “crossing borders”. Was there a conceptual understanding, and did they have enough background knowledge to write a text? The students were then given a writing task, where they discussed their attitude to “crossing borders” in the English-speaking world, using extreme sports as one example.

The last trait is connected to sense making and engagement. In this case study, the students demonstrated engagement with text when they partially self-organised the learning process that provided them with background knowledge for the written text production. In their short essays that followed, the students demonstrated, to a certain extent, sense making and concept understanding as well as emotions in written English. Below are some short excerpts from their essays:

On the running of the bulls in Pamplona: “People over 18 participate to show their courage at their own risk. These people have to outrun a pack of angry bulls behind them (…). Personally, I have respect for these people, but I also think they are stupid sometimes. It is what makes them happy, but in the end it might be what kills them”.

On zorbing: “They get you into the ball and they roll you down a hill. (…) This sport is something I want to try during my lifetime. I love getting an adrenaline kick, so these sports are perfect for me”.

On zorbing: “Heli-skiing and bungee jumping:  I think these sports are fun to watch and read about, but I will not try it myself”.

These excerpts demonstrate students’ sense making and engagement with text production. We argue that the combination of reading and audio-visual text in a partly self-organised context contributed to their essay production, which is not always the case in these classes. In connectivist theory, sense making and engagement go hand in hand and constitute a driving force behind learning in Internet based surroundings. Lack of data tracks, as in no text production, suggests the loss of engagement and it needs, according to Siemens, to be followed up by the teacher (Siemens, 2004; 2010).

Discussion

In the beginning of our paper, we contextualised Connectivism in higher education and discussions of MOOCs, and pointed to the impact of social media on teaching at the lower levels in educational systems. We argued that the connectivist approach should open a trajectory towards secondary education. We stress this point, due to the fact that our findings raise important questions about how future teachers should approach, integrate, and design the connecting and self-organising aspects of network-based technologies. We argue that this competence is a literacy that teachers need. This is primarily related to our research findings; we have demonstrated that a group of Norwegian vocational students are partially self-organised. In informal contexts, they develop knowledge and skills to search for and retrieve information from YouTube, and they develop their competences when using this literacy in order to solve self-chosen tasks. Under the right circumstances, that is when teachers design lessons that empower students, students transfer this competence, their social networked practices, to formal learning situations. Consequently, we have validated and provided empirical research on two aspects of Siemens’ (2004, 2005, 2010) Connectivism – self-organisation and learning as connections, which implies a contribution to, as well as an extension of, this new approach to learning in the digital age. Our research suggests that students enjoy taking responsibility for their own learning when they can connect nodes of information retrieved from audio-visual media such as YouTube to their academic competences in reading and writing. The pedagogical question that remains, is how future educators can make use of this resource and more importantly, how teachers can make their social network practice congruent with their students’ in order to develop students’ literacy in academic subjects.

However, this is a difficult and complex endeavour, and we do not claim to have found the correct answers. But, we observe that much of the disagreement between scholars in the “connectivist debate”, revolves around learning and whether the construction of knowledge happens in the human mind or whether it is distributed and can be attributed to the connecting of pieces of information embedded and transpiring from social structures like social networks in the extension of the human brain. This scholarly disagreement generates ambiguity about how learning takes place in social dynamics that connect different types of nodes in a network. One way out of this scholarly disagreement is, for example, to acknowledge that learning manifests itself in social interaction embedded in social contexts characterised by the use of digital technologies and cognition, and to focus on the social dynamics manifest in the connections that are made. One way to address students’ YouTube knowledge and skills, and the academic resources it represents, could be to bridge informal and formal learning spheres. We suggest a connectivist approach to lesson design that we will discuss in the following.

Our first point is that the connectivist approach to self-organisation contributes to a digitally inclusive understanding of the term, and to the empowerment of students in the learning process. In pedagogy, self-organisation is generally described as being able to set goals, plan, monitor and assess learning and is now often associated with assessment for learning, feedback and learning analytics (Wiliam, 2010). Self-organisation in the connectivist approach is for example the act of spontaneously retrieving information from YouTube to get a deeper understanding of a concept or an idea that also connects to other sources of information in a pattern that is meaningful to the user. In the connectivist approach, learning feeds on inner motivation, curiosity and creativity, rather than pre-set goals and pre-designed learning paths that easily lend themselves to valid testing. In formal education, this demands a shift from teacher controlled instruction to learner centred self-organisation in contexts characterised by rich and open learning tasks with a high degree of authenticity (de Jong et al., 2008). It also involves a shift from information provided by the teacher alone (cf. textbooks, reading lists) to a shared provision of information by students and teachers alike. In practice, learning processes in the classroom are still mainly designed and lead by the teacher and the textbook, not by students (Sandvik et al, 2012). Recent studies on attention such as multitasking and parallel processing, focusing on how to be mindful of attention when operating in hyperlinked and social media, suggest that self-organisation is particularly important in digital learning contexts (Rheingold, 2012). We suggest that teachers apply such research-based concepts to make students aware of their digital user patterns and the consequences of their choices, rather than just telling students to get off the Internet. In digital classrooms, students’ access to information on the Internet, may well result in information overload, and management of complexities, with the aim of  complexity reduction, must be part of the educational construct (Biesta, 2004). The development of students’ self-organisation contributes to lifelong learning (Bartolomé et al., 2011; Rheingold, 2012).

The other point is that the connectivist approach to learning as connections between nodes, broadens the scope of connections available for the student to learn from, and that this raises the question of content in educational systems that prepare for the 21st Century. Such permutations have several consequences, like recognising that informal learning must be ascribed more value in formal educational contexts, and that retrieving information and ascertaining its true value, as well as acting upon it, is ever more critical for any learner and educator (Siemens, 2004). First, to meet some of the criticism that learning as connections has met (Clará & Barberá, 2014), we would like to add a distinction between two kinds of nodes to the theory: nodes of information and nodes of knowledge, where the former relates to distributed knowledge or skills residing in other humans or various types of texts, and the latter relates to information that has been processed, understood and retained in the brain of the individual as either knowledge or skills. In other words, one person’s knowledge, be it tacit or explicit, becomes another person’s access to information and vice versa, when networked. Exhibiting competence in a subject demands the ability to solve a task by means of existing knowledge and information patterns. In this perspective, we follow the connectivist argument that learning happens inside the human brain, when connections exist between nodes of knowledge (cf. neurons and astrocytes) and outside the human brain, when connections exist among nodes of information in a social network (cf. YouTube, Facebook, Wikipedia, Twitter), and that when connected, these two systems render the discovery of patterns within a field possible. Patterns can for example be displayed in concept maps, skills or in various types of texts.

The pedagogical consequences of this line of thought are that educators should include a networked environment in their classrooms. In our study, we have demonstrated how students self-organise their informal learning on YouTube. We see this user pattern as an argument in the current debate on flipped classrooms, and we suggest that formal education make use of expandable nodes residing in students’ digital network. We also see that students have developed digital networks that can be activated when needed in order to solve a task, which we see as an argument against spending too much time on presenting knowledge and testing reproduction of knowledge in school. Also, the fact that information is accessible at the fingertips with mobile technology, renders knowing where to find nodes of information, equally important as spending time and effort on gaining knowledge from within a limited set of nodes of information.  Our data shows that if school takes students’ informal learning seriously, teachers must develop students’ existing connecting skills through reflection and discussions, using higher order thinking, problem solving and critical thinking in meaningful tasks. We see this finding in the light of the debate on what literacies secondary school should offer to prepare students for the 21st Century.

The last point that we want to make is related to the conception of literacy pedagogy in a connectivist approach to learning. Reading and writing literacies in educational contexts give advantages to those who acquire the necessary skills. It has an impact on cognition and shapes the way we think (OECD, 2009). While linguistic literacy has played a dominant role in defining teaching for centuries (Cazden et al, 1996), patterns of YouTube use among socially oriented, digitally skilled and interest-driven high school students suggest a wider scope. We argue that the inclusion of audio-visual literacy in education has far reaching consequences for pedagogical practice. There is a clear motivation for claiming this; there is no single research based definition of the pedagogical nature of technology. As a result, the terms “multiliteracy”, (New London Group, 1996), and “digital literacy” (Martin, 2006) are only two of several concepts used with in the intent to disclose what technology implies in learning. Digital literacy can for example be understood as:

The awareness, attitude and ability of individuals to appropriately use digital tools and facilities to identify, access, manage, integrate, evaluate, analyse and synthesise digital resources, construct new knowledge, create media expressions, and communicate with others, in the context of specific life situations, in order to enable constructive social action; and to reflect upon this process. (Martin, 2006:156)

This is an example of a wide and inherently complex definition, which is difficult to transform into educational practices and may therefore run the risk of being overlooked. We argue that education in the digital age would profit from a conceptual framework of literacies that supports students’ strategic and metacognitive learning in a set of more “teachable” technological contexts. The concept of nodes of information in the connectivist approach to learning displays the need for connecting strategies between various types of digital literacies, and for a better understanding of the bridging between old and new literacies (Rheingold, 2012), where for example the connection between audio-visual YouTube use and written text production can be explored.

Bawden (2008) presents one literacy of possible interest to the connectivist approach to learning: information literacy, which we modify to actively seek, find, store and curate information. The literacy connects nodes of information to nodes of knowledge through curation, which means to make quality knowledge systematically available to others as information in a network and describes the existence of a network of quality nodes and the competence it takes to keep it readily available and updated (cf. Wikipedia, Scoop.it). Another literacy of interest is audio-visual literacy that we, for pedagogical reasons and in line with the separation of reading from writing, would like to separate into two entities related to: audio-visual consumption (input) and audio-visual production (output). The former is what we chose to call “watching” literacy, which describes the process where nodes of audio-visual mimetic information are connected to nodes of knowledge in a learning process that feeds on watching literacy. The process can for example be described as learning from watching a YouTube video and bears some similarities with the reading process. The latter is a more complex entity, meaning that there are several possible subject fields and literacies involved in the output of video consumption. We can think of three: oral literacy, where students talk about a topic they have watched using academic and subject related concepts (cf. cognitive apprenticeship), video production literacy, where students produce their own videos using occupational concepts and technology (cf. media production), and “Do-it-yourself” (DIY) literacy, where students literally imitate what they have watched using implicit knowledge and skills (cf. apprenticeship). We have primarily been concerned with the former, watching literacy, which we define as:

the awareness, willingness and ability of individuals to watch videos in order to construct new knowledge, form ideas, understand concepts, form concept patterns and engage with audio-visual text, participate in oral conversations or fulfil tasks in constructive social actions; and to reflect upon this process and the transfer to other literacies (domains.)

In our analysis, we discussed why there is a clear reason for adding audio-visual literacy to linguistic literacies taught in schools. YouTube content easily creates engagement across informal as well as formal learning contexts. YouTube mobilises students across ages, sexes, institutions and social backgrounds, and bears similar characteristics to engagement with written text as described in the assessment of reading in PISA:

the motivation to read, and is comprised of a cluster of affective and behavioural characteristics that include interest in and enjoyment of reading, a sense of control over what one reads, involvement in the social dimension of reading, and diverse and frequent reading practices (OECD, 2009:24).

Most of these characteristics are present in students’ consumption of YouTube content in our data. Using students’ self-organisation, connecting strategies and their ability to share user-generated YouTube content, has, as we have demonstrated, the potential to create student engagement and participation in formal educational contexts. We see a clear parallel between engaged readers and video watchers in the definition above. We believe that further research on these literacies may contribute to the “teachability” of technology in educational contexts, something that is supported by the growing use of YouTube and video in both formal and informal contexts (Dubisar & Palmeri, 2010).

Stating this argument, we dear postulate that learning through audio-visual literacy over the Internet contributes to a paradigm shift in learning, and calls for a broader understanding of how ideas, concepts and concept frameworks can be formed. In line with Treadwell (2011; 2013) we argue that since the printing press was invented and information became available other that through word of mouth, educational systems have succeeded in developing a high level of reading and writing literacies in most populations. The future in education does not solely lie in an effort to further develop these literacies. We believe, the future lies in embracing the learner’s capacity to form ideas, concepts and concept patterns from audio-visuals under circumstances akin to those of our forefathers before the invention of reading and writing. In this sense, we agree with Mizuko Ito and her research team (Ito et al., 2013), that if students can use their social, interactive and online media skills for academic learning and opportunity in the classroom, inequity in education can be diminished.

Conclusion

We have demonstrated that a connectivist approach to learning contributes to possible new research insight in formal education. Moreover, we have argued that the connectivist approach is valid in the lower levels of an education system, a factor calling for a new direction in the debate on Connectivism and digital learning. This is foremost related to the fact that aspects of YouTube use among adolescents show that self-organisation is developed in informal contexts outside school, and that under the right circumstances; students are willing to engage with academic subject matter using self-organisation and connecting strategies in formal learning situations. Students make connections between sources of informal and formal content; they bond and bridge information and knowledge in order to construct new meaning in sense making activities significant for them, like oral discussions, writing and skills development. We have also established a need to connect the predominantly text-based approach to literacy in education to audio-visual literacy in students’ digital networks. In sum, the main intention with this article has been to cast light upon a subject matter we consider to be important; to enhance our knowledge on YouTube use and to connect it to Connectivism. We therefore hope that future researchers will continue the trail we have opened, and provide new insight, research and ideas.

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Biographical Statement

Halvdan Haugsbakken is PhD Candidate in sociology and M.Sc in social anthropology. Haugsbakken is affiliated to the Department of Sociology and Political Science at NTNU, Norway. Haugsbakken has worked as Research Scientist in SINTEF Technology and Society and his main research interests are the impact of new web interactive technologies on organisations.

Contact: Halvdan.Haugsbakken@svt.ntnu.no

Inger Langseth is currently working as an associate professor at the Programme for Teacher Education at NTNU in Trondheim, Norway, where she teaches foreign language didactics. She is also working at Charlottenlund secondary school, where she teaches English and French. Her main areas of research are assessment, international and European Education for democratic citizenship and human rights and the use of ICT and MOOCs in teaching and learning.

Contact: Inger.Langseth@ntnu.no


[i] We would like to acknowledge our students, who volunteered to be informants. Without you, it would have been more difficult to fulfil this case study. We are also grateful for the comments and suggestions from the two reviewers who carefully read our paper.

[ii] In the classroom context, we are making a distinction between the researcher, who observed the lessons and interviewed the students, and the teacher, who taught the class and wrote the logs. Otherwise, when using the term “we” in the text, we are referring to the two as researchers and authors of this article.

Interview with Carl Sandler

Published Online: July 17, 2014
Full Text: HTML, PDF

sandler1

Introduction

Carl Sandler started as the founder of DaddyHunt.com, a website geared towards older men and people who like older men. DaddyHunt.com was founded in 2005 and quickly grew into the largest online community for men over 40 and their admirers. Sandler found that what the community of DaddyHunt users wanted was validation that they were still ‘hot’ and desirable even as they grew older. The interview below is a conversation between Sandler and Diego Solares on behalf of Digital Culture & Education (DC&E) on the role of  Apps and HIV in the modern age.

DC&E: Tell us about the origins of the MISTER App

Sandler: DaddyHunt.com was the immediate predecessor to MISTER. During a time when mobile Apps were becoming more popular, I saw an opportunity to build a community around the same principles as DaddyHunt, but in a mobile format. The challenge was finding a way to become more than a utility for hooking up within the constraints of the mobile format. To create a sense of community on MISTER we start by asking users to opt into a “MISTER code” when they join the App. The MISTER code of conduct encourages members to protect their health and the health of their partners and to treat others with respect, among other things.  It’s very basic and simple and yet, remarkably uncommon for an App or website. In fact the only thing similar I am aware of is the Cockyboys Manifesto on http://cockyboys.com.

DC&E: Are users forced to accept the code of ethics in order to use the App?

Sandler: We have considered doing this but no, we don’t make it a requirement. We simply ask users to opt in when they join. Users also have an opportunity to opt-in to the code in the future. Users who choose to opt-in get a MISTER CODE badge on their profile and this helps foster a nicer and less judgmental environment for men to meet men.

DC&E: What else does MISTER do with respect to HIV?

Sandler: The MISTER Manifesto encourages members to live HIV Neutral. We ask users if they are open to dating someone of any (HIV) status. We did this because our research found that users are not very willing to self-report status on an App or website. We took a novel approach and instead ask users to state if they are open to dating and loving someone of any status. Users who select this option get a badge on their profiles that state they LIVE STIGMA FREE next to an icon from MR. FRIENDLY. MR. FRIENDLY is a non-profit that works tirelessly to reduce HIV stigma and we partnered with them to do this initiative. We think this is the right approach towards expanding the conversation around HIV within the context of an App. It’s extraordinary but there is still a tremendous amount of misinformation, fear and stigma within the gay online and mobile communities. Unfortunately, there is little support from the public health sector for Apps and websites that wish to work to influence behavior and educate users.

DC&E: What is MISTER’s reach?

Sandler: MISTER has had over a million downloads and continues to get thousands of downloads per day. We know that people meet in the real world after using the App but we don’t know how frequently it happens. MISTER collects data on usage and messages sent but most of our queries are done via third party tools like Flurry and Google Analytics. We have yet to work with a non-profit or HIV organisation to look at the data and ways to design and test interventions.

DC&E: How did you become interested in public health as a mobile App developer?

Sandler: I have always been interested in providing support to the gay community, including those who live and love with HIV every day. In 1994, I produced a safe sex gay porn film called Leg Licking that won first place at the International Gay and Lesbian Film Festival in San Francisco. Leg Lickin’ sought to eroticise condom use in porn at a time when it was still a relatively new concept. It was sponsored by Falcon Studios and the San Francisco AIDS Foundation. I also worked on the San Francisco AIDS Foundation hotline in 1993 while I was  at Stanford University. I personally feel an obligation to try and do my part to encourage gay men using MISTER to stay safe. I also write a column on sex and ethics for Huffington Post (www.huffingtonpost.com/carl-sandler) where I’ve tackled issues around Truvada/PrEP, HIV stigma and important health-related issues. You can also find me on the Morning Jolt on Sirius/XM Radio talking about sex, health, dating and relationships.

DC&E: What changes have you noticed in the HIV response among gay men and the proliferation of Apps and social media?

Sandler: Before online/App culture, health organisations went into bathhouses to reach gay and bisexual men at risk for transmission of HIV to perform local interventions. That was bold. Unfortunately, public health organisations haven’t taken as bold an approach with mobile Apps, despite their proliferation in the past 5 years as the principal gay meet-up environment for many millions of sexually active gay, bi and trans men. It’s very disappointing to be honest and quite short-sighted to see public health so slow to recognise the power of Apps and the potential opportunities to working with Apps—particularly those like MISTER—to design and test interventions.

The concept of ‘gay’ isn’t the same as it was before. Mobile Apps has increased reach. There are many men whose ‘gay’ lives are lived online through Apps and whose first experience with the gay community (including safer sex messages) is through an App. Many men live their entire gay lives online, through porn, websites and Apps. Public health needs to learn how to reach these populations where they live, just like the brave people who went to bathhouses back in the 70s and 80s to do outreach.

DC&E: What challenges have you experienced in working with the public sector?

Sandler: I am sorry to say that our experience with the public sector has been disappointing at best. The Public Health Sector has not figured out how to efficiently work with Apps and websites to test, create and measure successful HIV interventions. Or if they are doing it, it’s not something I am aware of.

Additionally, it seems public health providers are ill prepared to leverage social media to reach key populations at risk of HIV and other sexually transmitted infections. When the Meningitis Outbreak hit New York City a few years ago, it took many months for the City’s Department of Public Health to coordinate any sort of Facebook based approach because all messaging required layers of approval.  Presently, public health departments at all levels seem ill-prepared for the rapid response and agile advertising and marketing environment that is crucial to designing successful campaigns. Even the payment of invoices in public health takes many, many months. Many website owners I know won’t accept those kind of payment terms. Public Health Sectors globally, need to evolve to be able to leverage both Apps and social media when responding to an epidemic to reach key populations.

Additionally, the public sector needs to develop an return-on-investment approach to public health marketing. Period. They also need to attract and hire people to manage their media who are savvy and understand how to influence target populations and partner with the Apps who already have scale and have developed vibrant, active online and mobile platforms.

DC&E: Have there been other instances of public health departments running ads through MISTER?

Sandler: A few, but to our knowledge, they don’t necessarily have good methods of testing whether the ads were effective or viewed widely.  It doesn’t appear that public health providers are doing much more than running banner ads with limited and un-engaging ads.

It is remarkably inefficient for each state or county in the United States to be managing their own health promotion program within their small catchment area without collaborating or coordinating at a national level. Everyone seems to be managing small piles of money and marketing departments are looking at how to spend this money locally.  However, this isn’t how the world works anymore. Geosocial Apps and online websites used by men, to meet men, have national and global reach. Ad buys need to be coordinated where campaigns are tested, optimised and then launched nationally so that effectiveness and the return on investment can be quantified. This is how savvy for-profit companies operate. The Public Health Sector can learn much from the private sector.

The real value in Facebook (or any mobile App) is  not simply to expose people to an ad, but to take a specific kind of action or to share a piece of content. We live in a time when people are willing to consume media and share powerful messages. Some key questions to ask when designing online interventions are: How can public health learn from mainstream viral sensations? Where are these powerful pieces of content? Who is managing these kinds of efforts on a national or global level?

DC&E: What can be done to promote collaboration between public sector health agencies and Apps like MISTER?

Sandler: I’ve heard many people in public health complain that Apps and websites are not willing to partner but I can tell you that MISTER has been open to collaborating with public health for years, and no one has approached us with a single innovative project for collaboration.  No one in the public sector has taken us up on our offers to collaborate.

In fact, the most significant contact we’ve had with the public sector has been vis-à-vis Positive Impact of Atlanta who sued us in the United States District Court for the Northern District of Georgia over trademark issues.   If HIV organisations like Positive Impact have enough time and resources to spend their government and state funding fighting Trademark lawsuits then surely there must be resources available to collaborate with Apps to drive increased testing, reduce HIV stigma and educate the community about PrEP, PEP and other STIs.

Public health departments think they have reach because they may serve a few thousand people a year. Consider that the top 10 mobile Apps reach tens of millions of members DAILY. Imagine what kind of reach they could have if they spend time and energy developing successful partnerships?

DC&E: Are there any changes that you believe should happen within the community of App developers?

Sandler: There’s a lot that can be done with the design of the App itself.  But to make that happen we need input from the public sector. We recently added the option for users to say they are open to dating someone of any status. Why would the public health community leave it up to a web developer to make these kind of critical, important changes that effect millions of users in a complete vacuum?  The public sector needs to lead here. We just don’t have the expertise. What we know how to do is to build sustainable communities.

DC&E: What can be done to motivate mobile App developers to be involved in this work?

Sandler: The Public Health Sector needs to put real resources behind working with Apps; not just buying banner ads but really working in concert with Apps. I don’t think the Public Health Sector has effectively worked with the websites that preceded Apps but there is a new generation of App owners, like myself. Then there needs to be serious resources allocated to supporting and working with Apps because this is not our focus. This includes financial resources but also expertise and time because anything we do involves a large investment and risk.

DC&E: How can we foster more collaboration among App developers in HIV programming?

Sandler: Appoint an App Czar for the gay community. Someone whose job is to sit down with each of the Apps and websites and identify top priorities in terms of public health goals.  This person can act as the liaison to the Byzantine world of public health to see how changes can be implemented on each App, tested, refined and supported over time.

DC&E: Do you have any suggestions for improving Apps for HIV messaging?

Sandler: In general, Apps are designed to work in the same way in every country (with the exception of language). However, there is a need to communicate with members from different countries in different ways due to cultural differences and levels of education required. The health needs of a developing nation can be very different from those of a country like the U.S.  Apps need different levels of partnership for each country and perhaps, a unique set of tools for messaging. These are complex issues that need to be studied and evaluated.

DC&E: How much communication happens currently among App developers?

Sandler: I think that in general we don’t talk to one another since we are competitors. This is why it’s more important that The Public Health Sector drive individual conversations with App developers, rather than trying to work with the App developers as a group.

DC&E: What challenges remain for those seeking to make public health-focused Apps?

Sandler: The Public Health Sector doesn’t have the resources or the expertise to support and build active and growing communities online. They should instead focus on partnering with existing Apps and websites that already have the audience if at all possible.

Acknowledgements

Digital Culture & Education (DCE) thanks Diego Solares, Policy Advisor, HIV & Key Populations for the Futures Group for interviewing Carl Sandler and transcribing the interview.  We also thank Diego, Darrin J. Adams (Futures Group) and Dr. Christopher S. Walsh (The HIVe and Torrens University Australia) for collaborating to author the interview questions.

Biographical Statement

Carl Sandler is the CEO of Daddyhunt.com and the MISTER APP on iOS/Android. He writes about dating, HIV and health in his columns on Huffington Post (http://www.huffingtonpost.com/carl-sandler) and can also be found talking about relationships on The Morning Jolt on Sirius/XM Radio. He has a degree in Economics from Stanford University and lives in New York City.

Contact: carl@daddyhunt.com

Kimberley Green, Phillip Girault, Samuel Wambugu, Nana Fosua Clement, & Bashiru Adams

Published Online: July 17, 2014
Full Text: HTML, PDF

Abstract

The prevalence of HIV among men who have sex with men (MSM) in Ghana is more than 15 times greater than the prevalence of HIV among adult males in the general population. The prevalence of HIV among MSM in Accra and Kumasi is 34.4% and 13.6%, respectively. In 2012, the USAID Ghana SHARPER project — which supports HIV prevention and care among MSM — reached less than half of the 30,000 estimated MSM at the project sites. In 2013, SHARPER tested the use of social media by MSM community liaison officers to identify unreached MSM networks. We reached 15,440 unique MSM through social media, and 12,804 MSM through traditional outreach activities involving peer educators. The combined total of 28,244 MSM represented 92% of the estimated number of MSM in the country. There was little overlap among the MSM reached by the two methods. The use of social media is a very important avenue for reaching MSM who are not reached by peer educators in Ghana. The method should be adopted as an integral outreach approach for HIV-prevention interventions in the future.

Keywords: MSM, HIV, social media, peer education, Ghana

Background

Deeply rooted social stigma towards men who have sex with men (MSM) in Ghana affects their ability to access critical information and services for the care and prevention of HIV. In 2011, the Ghana Men’s Study revealed a high prevalence of HIV (17.5%) among MSM at five sites in Ghana, with the highest rates in Greater Accra (34.4%) and the Ashanti region (13.6%) (Aberle-Grasse et al., 2013). The majority of study participants (>70%) were between the ages of 18-24, living at home and reported having no or low income. That study found that the prevalence of HIV was higher among older MSM (>35 years) and those with higher levels of income. The same study found that less than half (44.8%) of the surveyed MSM population had accessed HIV-prevention services in the previous year, and that 37% in Greater Accra and 23% in Kumasi had been reached by a peer educator. They also estimated a population of 30,579 MSM in Ghana.

Before 2012, the USAID/Ghana SHARPER Project employed conventional HIV-prevention outreach activities through MSM peer educators who were associated with community-based organization (CBO) implementing partners in Ghana. The peer-education program was branded by MSM (as part of SHARP, the precursor to SHARPER) with a rainbow symbol and the tagline “It’s my turn” — to indicate that it was their right to be acknowledged, respected, and to have access to the same information and services as anyone else. Peer educators were selected by the CBOs for their leadership and communication skills, interest in HIV prevention and in supporting peers living with HIV, and their ability to complete short reports on completed work.

All peer educators were trained over a five-day period using a standard curriculum that focuses on communication skills, the role of the peer educator, HIV risk-reduction counseling, use of condoms and lubricant, management of sexually transmitted infections (STIs), HIV testing and counseling (HTC), illicit drug and alcohol use, mental health and self-esteem, gender-based violence, familiarity with key services, and learning to facilitate referrals. After training, peer educators are equipped with a toolkit to guide peer interactions between individuals and within groups. In light of the repressive environment, most interactions with peer educators are one-on-one. Outreach events are organized in a safe, discreet location, where from 20 to 50 MSM can take part in role-playing games and on-site HTC and STI services. These are known as “Love n’ Trust” events, which focus on the promotion of safer sex, routine HTC and STI screening, and partner HIV-status communication.

In addition, 11 MSM drop-in-centers (DICs) staffed by MSM leaders and part-time Ghana Health Service (GHS) nurses, offer HTC, STI screening and other health services.  The SHARPER project also trained GHS nurses that were located in health facilities near “hot-spots” in key population-friendly service delivery to facilitate greater MSM access to public health care services. MSM can also use “Text Me, Flash Me, Call Me HelpLine” to speak anonymously (and free of charge) with a trained GHS nurse about their health, psychosocial concerns or gender-based violence. After proving counseling, the nurses make referrals to peer educators, DICs or GHS services based on the client’s wishes, and provide follow-up counseling where needed.

Peer educators and DIC staff assigned unique identifier codes to all MSM they reached (for the protection of their clients). National standardized monitoring forms are used to record key information about the clients and the counseling and services that were provided. Peer educators are supervised by peer leaders and CBO field supervisors. Peer educators meet once a week to plan their schedule; and they participate in monthly meetings to review challenges and successes, and to learn new or reinforce previously acquired skills.

Despite attempts by the CBOs to recruit peer educators that represented different MSM sub-groups, the majority were less than 25 years old. In 2012, peer educators reached more than 12,000 MSM, most between the ages of 15 and 24 years old (FHI 360, 2012). This amounted to less than 50% of the estimated number of MSM in Ghana (Aberle-Grasse et al., 2013). Peer educators and CBO staff members indicated that they were aware of other MSM networks — particularly those that were older or discreet about their sexuality, and who were not interested in being directly contacted by a peer educator.

Through discussions with MSM affiliated with the CBOs, SHARPER learned that social media were increasingly popular among MSM, and might be a new way to reach older or more discreet MSM who were not currently interacting with peer educators. The majority (88%) of the Ghanaian population uses mobile phones; 76% own their own mobile phone (CDD, 2012). There has also been a rapid expansion of social-media use in Ghana, especially Facebook, which is the most frequently used platform. In the United States, Europe, Latin American and Asia, social media have been increasingly used for communicating HIV-prevention information, promoting the use of HIV testing and counseling with MSM, and for recruiting and to a lesser extent retaining MSM in research studies (Ko et al., 2013; Sullivan et al., 2013; Young et al., 2013; and Young and Jaganath, 2013). Therefore, the SHARPER project piloted social media outreach among MSM with the aim of reaching sub-networks of MSM that were not being reached by peer educators. This case study describes this pilot and examines the resulting level of coverage of traditional peer education and social media outreach.

Program Description

In early 2012, SHARPER canvassed its partner CBOs for recommendations of MSM leaders who might be at the center of MSM networks that included sub-group populations, such as older MSM, those who were more discreet about their sexuality, and others who might not be reached by peer educators. Three men who fit this profile were identified, one each in Accra, Kumasi and Tamale. These MSM were hired as community liaison officers (CLOs) to initiate social-media outreach activities in their respective communities. The CLOs recommended Facebook as the primary vehicle for reaching new networks of MSM, followed by Badoo, Whats App and Gay Romeo. The CLOs were supplied with a smart phone and a laptop computer and trained over the course of five days on HIV information and services – based on the same curriculum used to train peer educators. The CLOs were also trained how to count the MSM they reached and how to record monthly outputs.

The CLOs established new social media accounts and began to invite friends and contacts, while they conducted daily discussions on sex that interwove messages about HIV prevention, the use of condoms and lubricants, and routine HIV testing and STI screening. In addition, the CLOs operate a number of closed groups that discuss HIV, safer sex, sexuality, gender-based violence and psychosocial support needs. These groups are segmented by age and interests. The CLOs would also conduct private on-line and telephone conversations with MSM who requested more information or who were seeking referrals. In some cases, the CLOs physically accompanied their social-media contacts to the recommended services.

The CLOs also conducted outreach in bars, parties and other venues where their network congregated. In this way, they were able to increase their social-media contacts and to reach peers with information and referrals as needed. Peer educators rarely appeared at these venues, which typically attracted wealthier people.

The CLOs were recruited over different time periods; the one in Accra was hired first to test the original concept, learn from it, and then apply it to social-media outreach efforts in other locations. The CLO in Accra mentored and supported the CLOs in Kumasi and Tamale, explaining their roles and how to complete their monthly reports.

Project staff met with the CLOs every two weeks to review their progress, and once a month to discuss the CLOs’ monthly outreach reports. The CLOs tracked the number of unique MSM that were reached. For the SHARPER project, an MSM is defined as “reached” if he received all of the following: a risk assessment, information on HIV prevention and a referral to HTC (or another HIV service). Each MSM was assigned a unique identifier code to facilitate the counting of reached individuals. We assessed for client overlap between peer education and social media outreach and found that 18% of MSM in Accra and 27% in Kumasi were also contacted by a peer educator in the past twelve months. We adjusted the number of MSM reached through social media by these proportions.

Results from the pilot

In 2013, 15,440 unique MSM were reached through social media by three CLOs compared to 12,804 contacted by 110 peer educators. This amounted to 28,244 individual MSM reached which represented 92% of the estimated number of MSM in Ghana (FHI 360 2013). The majority of MSM reached through social media or by peer education were contacted two or more times during the reporting period.

Reporting data suggest that HTC service utilization may have increased as a result of social media outreach. In Accra, more than 99% of MSM reached through social media reported having accessed HTC in the past year. While only 64% of MSM reached by peer educators is the same period reported having been tested for HIV.

CLOs reported of high level of acceptability among MSM in their extended network of their on-line outreach. MSM found it to be a convenient and safe way of communicating about their sexual health needs and how to locate MSM-friendly services.

In addition, the CLOs report being sought by staff from MSM CBOs and others working with MSM in Ghana to advise them on their outreach strategies, and how to better utilize social media and tap into new networks of MSM needing access to HIV prevention and care information and services.

Discussion

This pilot study underscores the value of social media in reaching new networks of MSM in Ghana, and using a more diverse approach to reach MSM with HIV-prevention interventions. Studies in the United States, Europe, and Asia that compared internet-based and face-to-face approaches to recruit MSM for HIV-prevention interventions, research, or surveillance concluded that internet-based approaches not only tended to reach new networks of MSM, they also reach higher risk sub-populations (Evans, Wiggins, Mercer, Bolding, & Elford, 2007; Fernández et al., 2004; Tsui & Lau, 2010; Guo et al., 2011; Khosropour et al 2014; Sanchez, Smith, Denson, Dinenno, & Lansky, 2012).

There were a few important challenges experienced during implementation of the pilot. The first was managing accurate enumeration of MSM reached through social media. During the first several months of the pilot, the CLOs and SHARPER team tested a number of different approaches to accurately measure unique contacts until a method was devised that was both sound and acceptable to the CLOs (as described in the program description). The second challenge involved the difficulty of verifying service utilization among MSM contacted by the CLOs. Peer educators use carbon copy referral slips that are collected by implementing partners at service delivery sites once a month. With social media outreach, it was not possible for CLOs to provide MSM with referral slips, or to verify from the service provider that the service was accessed given the long list of public and private providers utilized by MSM across the three pilot cities. We were only able to collect self-reports as part of this pilot.

A number of questions need to be answered about the use of social media to reach MSM in Ghana. Formative research among MSM has touched on social media but more is needed to explore for which MSM sub-populations social media is most appropriate, types of information preferred and in what format, and frequency of use of different social media platforms (Sabin et al., 2013a; Sabin et al., 2013b).

We need to learn more about the risk behaviors of MSM contacted through the social media intervention, and whether they are at greater risk of HIV than MSM who are typically reached through peer education. We also need to determine the relative effects of social-media outreach and peer-education efforts on changes in HIV-prevention behavior and knowledge, including the use of condoms and lubricants, and the use of HTC and STI screening. In the United States, social-media outreach among MSM was associated with reductions in reported sexual risk-taking and an increased uptake of HIV testing (Ko et al., 2013; Young et al., 2013; Young and Jaganath, 2013).

Also, there may be ways to enhance the depth and quality of the social-media outreach experience. For example, more structured on-line HIV prevention “events” such as brief stories or case studies, video shorts or games could focus on generating discussion that may be more engaging to social media contacts (Jaganath et al 2012). MSM social media contacts could also interact with scenario-based applications where as avatars they navigate real-life challenges to HIV prevention (Christensen et al., 2013).

Facebook offers an opportunity to post advertisements for HTC. In the US, the Centers for Disease Control and Prevention (CDC) “Testing Makes us Stronger Campaign” is an excellent example of using social media to promote HTC uptake among MSM (CDC ND). We also need to identify ways to track referrals made through social media to HTC including the use of e-vouchers.

Conclusion

Social media is a very important avenue for reaching MSM not traditionally accessed by peer educators in Ghana and should be adopted as an integral outreach approach for HIV prevention interventions moving forward.

Acknowledgements

This work was made possible by the generous support of the American people through the U.S. Agency for International Development (USAID). The contents are the responsibility of the authors and do not necessarily reflect the views of USAID or the United States Government.

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Kathryn E. Muessig, Nina B. Baltierra, Emily C. Pike, Sara LeGrand & Lisa B. HIghtow-Weidman

Published Online: July 17, 2014
Full Text: HTML, PDF

Abstract

Young, Black men who have sex with men and transgender women who have sex with men (YBMSM/TW) are at disproportionate risk for HIV and other sexually transmitted infections (HIV/STI). HealthMpowerment.org (HMP) is a mobile phone optimised online intervention that utilises behaviour change and gaming theories to reduce risky sexual behaviours and build community among HIV-positive and negative YBMSM/TW. The intervention is user-driven, provides social support, and utilises a point reward system. A four-week pilot trial was conducted with a diverse group of 15 YBMSM/TW. During exit interviews, participants described how HMP components led to behaviour changes such as asking partners’ sexual history, increased condom use, and HIV/STI testing. The user-driven structure, interactivity, and rewards appeared to facilitate sustained user engagement and the mobile platform provided relevant information in real-time. Participants described the reward elements of exceeding their previous scores and earning points toward prizes as highly motivating. HMP showed promise for being able to deliver a sufficient intervention dose and we found a trend toward higher dose received and more advanced stages of behaviour change. In this pilot trial, HMP was well accepted and demonstrates promise for translating virtual intervention engagement into actual behaviour change to reduce HIV risk behaviours.

Keywords: Men who have sex with men, MSM, transgender, HIV, eHealth, mHealth, mobile, intervention, sexual behavior

Introduction

Within the United States (US), young, Black men who have sex with men (YBMSM) and transgender women (TW) who have sex with men face a disproportionate burden of HIV infection (Baral et al., 2013; Herbst et al., 2008; Johnson et al., 2013; Oster et al., 2013; Wejnert et al., 2013). Compared to older and non-Black MSM, YBMSM are less likely to know their HIV status and receive optimal HIV care_ENREF_18 (Millett et al., 2012; Oster et al., 2011; US Centers for Disease Control, 2010). Structural-level interventions are needed alongside  supported individual behaviour-change to reduce transmission and improve care for HIV and STI among YBMSM/TW. A few individual-level interventions for Black MSM have demonstrated reductions in unprotected anal intercourse (UAI) and increased HIV/STI testing (Maulsby et al., 2013). However, in-person delivery and sustained behaviour change demand significant resources, limiting intervention scalability and impact. 

High ownership of computers and mobile devices among YBMSM provides a cost-effective, familiar platform to deliver tailored internet- and mobile web-based (electronic health, or eHealth) interventions to improve HIV prevention and care (Community Marketing Inc., 2012). YBMSM’s widespread use of online social and sexual networking tools (Duggan & Smith, 2014) suggests that eHealth interventions that utilise social networking and other engaging strategies such as gamification have a greater chance of adoption and sustainability (Gay, Pollak, Adams, & Leonard, 2011; Gustafson et al., 1999). Virtual communities can act platforms through which to implement eHealth interventions by connecting like-peers who can share their experiences, exchange information, and provide mutual counselling, support, and encouragement (Meier, Lyons, Frydman, Forlenza, & Rimer, 2007; J. J. Prochaska, Pechmann, Kim, & Leonhardt, 2012).

Past internet-based interventions for MSM have shown preliminary success in increasing condom use (Carpenter, Stoner, Mikko, Dhanak, & Parsons, 2010; Chiasson, Shaw, Humberston, Hirshfield, & Hartel, 2009; Ko et al., 2013; Miranda, 2013; Rosser et al., 2010) and HIV testing (Ko et al., 2013; Rhodes et al., 2011; Blass et al., 2010; Chiasson et al., 2009). Numerous eHealth intervention components can support sustained engagement and behavior change including: tailoring and user-focus (Lustria, Cortese, Noar, & Glueckauf, 2009; Lustria et al, 2013), user engagement features such as gamification (Baranowski, Buday, Thompson, & Baranowski, 2008; Brox, Fernandez-Luque, & Tollefsen, 2011; Enah, Moneyham, Vance, & Childs, 2013; Primack, 2012), social networking and support (Gay et al., 2011; Gustafson et al., 1999), and access via mobile devices (Gay et al., 2011; Gabarron, Serrano, Wynn, & Armayones, 2012). Our goal was to incorporate all of these promising features in an HIV/STI eHealth intervention explicitly tailored for YBMSM/TW.

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Figure 1. Screen shot of the HMP.org intervention home screen

HealthMpowerment.org intervention

HealthMpowerment.org (HMP) (Figure 1) is a multi-feature eHealth intervention to reduce risky sexual behaviours, promote health and wellness, and support community-building among YBMSM/TW (Hightow-Weidman et al., 2012; LeGrand, Muessig, Pike, Baltierra, & Hightow-Weidman, 2014; Muessig et al., 2013). We developed HMP through consecutive rounds of evaluation among 130 YBMSM/TW. The website is user-driven and employs responsive web design to optimise computer and smartphone access.

Through HMP’s user-driven design, participants choose when and how to engage with the intervention. Each user creates a profile and an avatar to allow personalisation with anonymity. Information on HMP covers a range of health and lifestyle topics (Table 1) to support users’ diverse backgrounds and varying need over time. For example, HMP includes resources and support forums for those: never tested for HIV (Figure 2), recently diagnosed HIV-positive, starting antiretroviral medications (ART), and already on ART for a number of years. Health and HIV/STI information is provided through multiple site features including: Quizzes, Know Your Risk (behavioural risk assessments), Ask Dr. W (Figure 3), The Scene (choose-your-own adventure decisional balance game) and the House of Mpowerment (library of brief educational articles and videos) (Table 1). Participants can explore areas of interest and then use the forums, Ask Dr. W, and external resource links to gather additional information and feedback from other users.

Table 1. Components of the healthMpowerment intervention website

Site section Intervention user activities Intended outcomes
House of Mpowerment Read articles (HIV/STI, health) - Gain new knowledge
Ask Dr. W (Figure 3) Post anonymous health questions for HMP doctor who responds - Gain new knowledge

- Dispel inaccurate knowledge

- Decrease sexual health stigma

- Decrease risk behaviours

Judge Your Skills Complete health knowledge quizzes - Gain new knowledge

- Dispel inaccurate knowledge

Know Your Risk Complete HIV/STI risk assessment profiles - Increase risk awareness (e.g. sexual behaviours, alcohol/drug use)

- Gain new knowledge

My Life, My Goals Set steps to achieve health goals and receive links to support resources (e.g. tobacco quit lines) - Increase healthy behaviours (e.g. quit smoking, increase exercise, increase condom use)
The Scene Make behaviour decisions to navigate a choose-your-own adventure game for real-life scenarios. - Increase risk awareness

- Explore potential health outcomes of decision pathways (e.g. forgoing condom use with a new partner leads to an STD)

Journal Complete entries in private journal sections (medical history, sexual partners, free text) - Increase risk awareness

- Increase self-monitoring and assessment

Get Tested Use GPS locator for HIV/STI testing and care resources - Increase awareness of testing, counselling & care resources

- Increase self-reported HIV/STI testing

HMP Store (Figure 2) Earn points by using HMP to “purchase” prizes (e.g. condom wallet, HMP tshirt), order free HIV/STD test kits - Sustained intervention use

- Provide free self-testing resources

- Increase HMP social network

Local Flavour Read and post reviews of local businesses and health services - Build community among YBMSM by increasing social options, shared interests and raising awareness of gay-friendly venues and providers.
Events Read and post events to the community calendar application - Build community among YBMSM by increasing social connections/ options, shared interests and raising awareness of LGBTQ events.
Getting Real View, create and share multi-media submissions (e.g. poetry, videos, photos)on relevant health and life issues - Build community

- Decrease HIV, race-ethnic minority and MSM-related stigma

- Establish positive social norms

Forum Post and comment to message boards for health and life topics and advice - Build community

- Establish positive social norms

- Gain new knowledge

To encourage continued use, participants earn points for completing actions on HMP (e.g. submitting an event to the activities calendar, 5 points; achieving perfect scores on all the health quizzes, 100 points).  Points “level-up” users’ status within the site (“new face”, “statement”, “star” and “legend”) and earn prizes from the HMP store (e.g. water bottle, messenger bag, hoodie sweatshirt, condom wallet, Figure 2).

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Figure 2. Screen shot of the HMP.orgStore” and available prizes

Prior to HMP’s full randomised controlled trial, we conducted a four-week pilot trial. In this manuscript we demonstrate how HMP components led to changes during the pilot trial in participants’ health behaviour intentions and actions across the spectrum of the Stages of Change (J. O. Prochaska & DiClemente, 1992; J. O. Prochaska, Redding, Harlow, Rossi, & Velicer, 1994). We describe features of HMP that provided actionable health information for participants and facilitated sustained intervention engagement.

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Figure 3. Screen shot of the HMP.org intervention “Ask Dr. W” health care provider forum

Methods

Participants

Study methods and quantitative survey outcomes are reported elsewhere (Hightow-Weidman et al., under review). In brief, study announcements were posted in diverse settings in the North Carolina Research Triangle area and online. Inclusion criteria were: born biologically male, age 18 to 30, self-identify as Black or African American, report ever having sex with another man, and reside in North Carolina.

Procedures

At the baseline office visit, participants completed a computer-assisted, multi-domain survey (sexual behaviours, condom attitudes, HIV/STI test history, depression/anxiety, stigma experiences) and a hands-on, guided HMP.org tutorial during which they created a user log-on name and password. Participants were instructed to use the HMP site for at least one hour per week for four weeks. As there are currently no best practice guidelines for type or length of dose for internet-based interventions (Donkin et al., 2013; Lustria et al., 2009; Lustria et al., 2013) one hour per week was selected as a minimum desired dose to be comparable in length to a weekly in-person one-on-one or group counselling session. The user-driven design of HMP.org allows participants to selectively use site features most relevant and timely to them without regard for the length of time it takes to complete a particular activity. For example the length of time required to locate an HIV test clinic, complete a risk assessment, and contribute to a discussion forum might vary, but these activities could all be of equal importance in the behaviour change process of different (or the same) users. Text message reminders were sent to participants who did not log-on to the site at least once per week.

At the end of the four week trial, a second in-person follow-up visit included a repeat of the baseline survey with added website usability questions and a semi-structured qualitative interview exploring users’ evaluation of HMP.  During the exit interview study staff loaded HMP.org on a computer. Participants navigated through the site while commenting on each section including their use (or non-use) during the field trial, impressions, and assessments. All participants were asked to discuss how their use of the site changed over the four weeks and whether anything in their life changed as a result of using the site. Qualitative interviews lasted between 30 and 70 minutes and were recorded with participants’ consent. The analysis in this manuscript focuses on this qualitative interview data.

Theoretical framework

This analysis applies the Stages of Change behavioural theory as a conceptual framework and organisational tool to accommodate the diversity in HMP’s intervention components and to identify pathways and mechanisms through which HMP may affect participants’ behaviour change processes.  In the Stages of Change theory, also referred to as the transtheoretical model, an individual moves through five stages of behavioural change (precontemplation, contemplation, preparation, action, and maintenance, Table 2) from being unaware and having no intention to change, to ultimately maintaining long-term change in a desired behaviour (J. O. Prochaska & DiClemente, 1992). At each stage there are hypothesised mechanisms, processes, and cues to action that encourage movement toward the subsequent stage (J. O. Prochaska et al., 1994). This theory has been applied extensively to study condom use behaviours (Ferrer et al., 2009; Grossman et al., 2008; Gullette & Turner, 2004; Noar, Crosby, Benac, Snow, & Troutman, 2011; Prat, Planes, Gras, & Sullman, 2012; Tung, Lu, & Cook, 2010) and, less so, HIV medication adherence behaviours (Genberg, Lee, Rogers, Willey, & Wilson, 2013; Willey et al., 2000). While the Stages of Change theory is often portrayed linearly, individuals may cycle through stages multiple times during the behaviour change process (Chang et al., 2006).

Analysis

Interview recordings were professionally transcribed (© 2014 Verbal Ink) and entered into ATLAS.ti for analysis (qualitative data analysis software, Version 7, Berlin 2011). Three study team members reviewed all transcripts and developed a coding scheme. The code book was designed to capture all examples of health behaviours/actions and behavioural intentions that a participant related to their use of HMP during the four-week pilot trial, components of HMP mentioned, and the participant’s reflections on the outcomes of their actions. Codes were inclusive of all health areas discussed (e.g. diet, exercise, smoking, sexual health). Each coded behaviour/intention was assigned one or more stage(s) of change as summarised in Table 2 and informed by the context of the participant’s interview. For example, for the health behaviour change outcome of “establishing regular HIV testing”, an instance of talking about wanting to get a HIV test based on an article read on HMP was categorised as “Contemplation”, while an instance of describing an actual plan for getting an HIV test (e.g. clinic identified, appointment scheduled) was categorised as “Preparation”. Coders referenced participants’ quantitative survey data for additional information about behaviours reported during the interview.

Table 2. Stages of Change addressed by healthMpowerment components

Stage Definition HMP components Example user statements
Precontemplation Does not perform behaviour. No intention to change House of Mpowerment; Know Your Risk; Forum I didn’t really know what I was looking for until I happened to stumble upon it1
Contemplation Thinking about adopting the behaviour House of Mpowerment; Know Your Risk; Forums; Judge Your Skills; Ask Dr. W That’s what I would go on a website for, see what people are talking about…if I could benefit from anything. Made me want to post… questions2
Preparation Plans to perform the behaviour, may try out the behaviour but does not do it consistently House of Mpowerment; Ask Dr. W; Forum; My Life, My Goals; The Scene; Journal [The site] has gotten me to…go outside of my comfort zone. This gave me a stepping stone…I’m able to socialise a little bit more!3
Action Consistently performing the behaviour (<6 months) Ask Dr. W; Journal; My Life, My Goals; Get Tested; Forums; Point system My whole attitude about condom use changed…  [condoms are] one of the big things I’m working on now4
Maintenance Persisted in performing the behaviour consistently (> 6 months) Journal; Get Tested; Point system; Forum; Local Flavor; Events [The Forum] related to me…to see people reaching out for help…I’ve been through it too, and that’s where I will give advice.5

1 HMP13, HIV-positive, age 29; 2 HMP06, HIV-positive, age 23, TW; 3 HMP08, HIV-positive, age 27; 4 HMP04, HIV-negative, age 29; 5 HMP07, HIV-negative, age 23.

Two team members independently coded all interview transcripts within ATLAS.ti. Discrepancies were reviewed by a third team member and resolved by group consensus. Coded text and participants’ demographic information (e.g. age, education, HIV status) were used to generate matrices in Microsoft Excel to facilitate grouping and comparing behaviours, participants, HMP intervention usage, and stages of behavioural change.

Detailed analysis of the intervention site usage measurement and patterns is reported elsewhere (Baltierra et al., 2014). In brief, participant activity on the website was tracked through a secure administrative portal. Built-in site tracking included time stamps for each user’s activity on the site and automated log-out which occurred after 10 minutes of inactivity. Usage data was validated against aggregate statistics from Google Analytics reports and each participant was assigned a usage category based on total time spent on the site during the trial (low=less than one hour; medium=one to five hours; high=more than five hours). Participants’ usage categories were also checked against their total points earned on HMP. As expected, these measures were correlated: those who were high users had the highest total points, while low users had the lowest total points. The usage categories were applied in this qualitative analysis to explore patterns between intervention usage and stages of behavioural change.

Results

Sociodemographic characteristics

Table 3 presents the sample’s sociodemographic characteristics. Participants ranged in age from 20 to 30 years old. Six participants were HIV-negative and nine were HIV-positive. Participants were asked their: biological sex at birth (required “male” for study inclusion), current gender identity, and current sexual identity (Table 3). While these categories include some overlap (e.g. a transgender person may also identify as gay or bisexual), participants were asked to select the category that “best” describes them and allowed unlimited space for write-in options if they preferred to state their gender or sexual identity in their own words. Six men described their sexual identity as gay, four as bisexual, one as transgender, and four wrote-in a description (queer, same sex loving, MSM, agnostic). Six out of 15 men earned under $11,000 annually and 12 had greater than high school education.

HMP usage

Our field trial had 100% four-week retention: all 15 participants completed baseline and follow-up surveys and qualitative interviews. Two of the 15 participants did not log on to the site during the four-week trial. Among the remaining 13 active HMP users, average total time spent on the site was five hours and three minutes (range: 0.5 – 13.3 hours). Among the two participants who did not use the site during the trial, the first reported difficulty logging in and the second explained that they were too busy. However, both participants completed the guided tours of the site at baseline and four-week exit interview (described above). Thus, all 15 participants were exposed to HMP enough to comment on its design, desirability, and usefulness.

Analysis of participants’ usage of HMP and stages of change revealed specific patterns (Table 4). First, participants who were categorised as “high” users were more likely to describe behaviours across all the stages of behavioural change. Second, across all stages, low users were most proportionally represented in the Contemplation stage, while medium users were most proportionally represented in the Preparation stage and high users were most proportionally represented in the Action stage. Third, the Action and Maintenance stages were the least commonly represented overall, while the Contemplation stage was the most commonly represented.

Table 3. Sociodemographic characteristics of 15 HMP.org field trial participants

Continuous Variables

Mean

[SD]
Age in years

26.1

[3.3]
Categorical Variables

N

(%)
Education

High school or GED

Professional, technical or trade school

Some college

College degree

More than a college degree

3

1

8

2

1

(20.0)

(6.7)

(53.3)

(13.3)

(6.7)

Currently employed

9

(60.0)
Income last year

Less than $10,999

11,000-20,999

21,000-30,999

6

7

2

(40.0)

(46.7)

(13.3)

What gender currently best describes you?1

Man

Woman

Transitioning

Undecided

Not reported

10

0

1

1

3

(66.7)

(0.00)

(6.7)

(6.7)

(20.0)

How do you best describe your sexual identity?1

Gay

Bisexual

Transgender

Write-ins: queer, same gender loving, MSM, agnostic

6

4

1

4

(40.0)

(26.7)

(6.7)

(26.7)

HIV Status

Positive

Negative

9

6

(60.0)

(40.0)

1 Gender identity and sexual identity questions were asked separately with the categorical choices listed above and a write-in option. No participant wrote-in an option for the gender identity question, while four participants wrote-in an option for the sexual identity question.

Behaviour change

Based on participants’ feedback, the user-driven structure, interactive components, and point reward system of HMP allowed participants to explore information of greatest interest to them, compete against themselves, and engage with other users and study staff around a number of HIV-related topics such as coping with diagnosis, dealing with discrimination and stigma, managing medications, and navigating sexual relationships. This engagement with the intervention components took various forms including receiving and providing advice, debating user-generated topics (e.g. disclosing HIV status to a new partner), providing affirmation, and sharing experiences.

As described in the exit interviews, participants connected their online engagement with HMP features to real-world actions and behaviour changes completed during the four-week trial. Some of the actions we describe in this manuscript are primary intervention target outcomes (e.g. reducing unprotected anal intercourse) while other actions are secondary outcomes (e.g. increasing HIV/STI testing) or intermediate changes in behaviour (e.g. increasing awareness about triggers of risk behaviours) along the pathway to the primary behaviour change outcome.

Table 4. healthMpowerment intervention usage and Stages of Change

User

ID

Usage category

Stage of change

Precontemplation

Contemplation

Preparation

Action

Maintenance

1 Low

5 Low

9 Low

10 Low

2 Medium

3 Medium

6 Medium

13 Medium

14 Medium

15 Medium

4 High

7 High

8 High

11 High

12 High

Overall %(n) 80%(12/15) 93%(14/15) 73%(11/15) 53%(8/15) 67%(10/15)
Low 17% (2/12) 29% (4/14) 9% (1/11) 13% (1/8) 20% (2/10)
Medium 42% (5/12) 36% (5/14) 45% (5/11) 25% (2/8) 40% (4/10)
High 42% (5/12) 36% (5/14) 45% (5/11) 63% (5/8) 40% (4/10)

The intentions/actions/behaviours described by participants ranged across all phases of the Stages of Change (precontemplation, contemplation, preparation, action, maintenance) including, for example: changing attitudes about HIV testing, increasing awareness about triggers of risk behaviours (e.g. drugs, alcohol, depression, lack of social outlets), asking partner(s) about their sexual history/HIV status, reducing number of sexual encounters, getting HIV tested, and telling others to get HIV/STI tested. In addition to HIV-related health behaviours, other health-positive behaviour changes that participants attributed to their use of HMP included: going to the gym, losing/gaining weight, quitting/reducing smoking and alcohol use, saving money, and attending community-based social events.

Precontemplation

In our analysis, sections of interview discussions that were characterised in the precontemplation phase of behaviour change commonly included participants’ references to the social support features of HMP. Among men whose HMP-affected behaviours could be classified in the precontemplation stage, the most commonly reported barriers to behaviour change included lack of awareness, fear, and lack of social support. As described by participants, HMP provided information, examples, and activities in an engaging manner, raising awareness and facilitating further consideration of specific health topics and risk behaviours. As one participant explained about health and sexuality information he read on HMP, “I didn’t really know what I was looking for until I happened to stumble upon it” (HMP13, HIV-positive, age 29).

Men reported feeling a sense of connection to others through HMP and the responses they received from Ask Dr. W and other participants. As one man explained, “It’s all about information, learning together, helping each other” (HMP07, HIV-negative, age 23). Some participants reported not feeling comfortable enough to participate in certain sections of HMP (e.g. photo and video posts of the Getting Real section) due to their shyness or fear of being recognised. The user-driven design of these sections facilitated engagement for these individuals at the precontemplation stage. As one YBMSM noted, when he watched others’ videos, “It was something I could relate to because it was a similar situation for me” (HMP14, HIV-positive, age 30). Although this participant did not contribute actively to the Getting Real section, he read and watched other peoples’ contributions.

Participants also described examples of how HMP provided experience-based information that helped to dispel fears and instil hope. In reading about other YBMSM/TW’s experiences, one man explained, “I connected a lot, and when I did feel connected, I would share my information with them” (HMP07, HIV-negative, age 23). This participant went on to describe how HMP could help users extend empathy toward each other. YBMSM/TW could also learn coping strategies from each other. In describing healthcare management, one participant described how HMP connected HIV-infected men at different stages post-diagnosis:

I can truly help you because I understand where you’re at in life…because I’ve been dealing with it [HIV] for 10-plus years and I have the same bills you have, I have the same concept of being a grown-up that you do, so I can help you get through it easier than somebody who is not dealing with it [or] nowhere near your age group.  (HMP15, HIV-positive, age 25)

These social interactions on HMP provided motivation: “What really caused me to get on [HMP] was hearing how other people were dealing with things” (HMP01, HIV-positive, age 29). Participants especially liked the videos and postings in the Getting Real section of HMP. Similarly, another participant explained, “I would come on to the site if I needed to talk with someone, maybe I’m going through the same depression that someone else is” (HMP09, HIV-positive, age 30, TW). Another participant echoed this sentiment stating, “It was good to see that I’m not the only one going through certain things in life and that we’re all human…that just changed my perspective a little bit about my outlook on life…a little more hope” (HMP06, HIV-positive, age 23, TW).

Contemplation

In our analysis of HMP-affected behaviours that were categorised in the contemplation stage of behaviour change, participants’ discussions included how HMP provided additional information, social support, and goal-setting features. As described by a number of participants, these features mutually reinforced learning. For example, participants would take a quiz, then read articles and retake the quiz to increase their score. One user explained, “The whole point to be on [HMP] was to gain information and knowledge” (HMP01, HIV-positive, age 29); another user stated: “The educational part for me was most interesting…[I] started off with the Forum and then really started getting into the information and tests sections – wanted to learn, wanted to win” (HMP03, HIV-negative, age 30). This user highlighted the importance of the games, challenges, and built-in reward features of HMP which positively reinforced continued intervention engagement.

Importantly, users described how the interactive knowledge-based components of HMP provided new information: “I didn’t know too much before, especially [about] STD and sexual health” (HMP14, HIV-positive, age 30). Participants strongly endorsed the HMP feature of being able to talk to a doctor anonymously (Ask Dr. W) and described feeling comfortable asking personal questions. A number of users reported being drawn to this section of the website when they noticed that they had similar questions as others: “Somebody may have the same question but they may be scared to ask, while somebody else may be bold to ask” (HMP05, HIV-negative, age 23).

A number of participants described being inspired by other users to ask a question. As one man stated, “We can ask [Dr. W] anything…after reading how she responded to other people” (HMP10, HIV-negative, age 22). All participants reported high ratings for the HMP Forums: “That’s what I would go to on a website for, to see what people are talking about and see what they think….see if I could benefit from anything. It made me want to post some questions of my own” (HMP06, HIV-positive, age 23, TW).

Preparation

Participants described examples of how information and virtual interactions on HMP helped them take steps toward healthy behaviours. A number of participants credited HMP with facilitating in-person health-related conversations with their friends and partners. For example, two participants noted that HMP prompted them to begin asking their partners about their sexual history, HIV status, and drug-use (HMP04, HIV-negative, age 29; HMP02, HIV-negative, age 20). For other men, interactions on the site moved them closer to health care services including HIV/STI testing, general health, and mental health: “When I asked the question [on the Forum]…people replied to me in the post, I ended up calling to a couple places…and set up [counselling] appointments in the realisation that I could possibly benefit” (HMP06, HIV-positive, age 23).

Some participants noted that they could share HMP’s resources with others. As one man stated, “If I knew someone who did have questions, it’d be an easy place to say ‘oh you should check this out.’” (HMP13, HIV-positive, age 29). Another man explained, “I learned a lot…and then, say if you had a friend that is going through a dilemma…you can say….hey I found this, maybe we can go [get tested] together” (HMP07, HIV-negative, age 23). Importantly, participants recognised HMP as a tool they could apply in their daily lives: “I think the really cool thing about the site that I want it to facilitate is these kind of real-world spaces” (HMP13, HIV-positive, age 29).

YBMSM/TW also described the role of HMP as: “Empowering yourself physically, ethically, psychologically” (HMP09, HIV-positive, age 30, TW). As one user described,

A: [The site] has gotten me to…go outside of my comfort zone…gave me a

stepping stone, and I  actually found that I’m able to socialise a little bit more, and I was surprised when that happened!

Q: How did that happen?

A: Opening up and seeing other people open up. (HMP08, HIV-positive, age 27)

This passage is typical of how HMP facilitated movement from the preparation to action stage for many participants through modelling behaviour and providing social support.

All participants responded positively to HMP prizes describing how this feature motivated them increase their site use. One man also described how the HMP logo on the prize items (see HMP Store screenshot, Figure 2) provided opportunities to tell others about HMP and initiate sexual health conversations with friends and partners (HMP15, HIV-positive, age 25).

Action

Some participants reported changes in their behaviour during the pilot trial based on their interaction with the HMP intervention. This included reductions in sexual-risk behaviours, but also extended to other health areas including nutrition and fitness, substance use, and mental health.

One participant was motivated to reduce unprotected sex after reading the response to the question he posted on Ask Dr. W about his genital herpes infection:

One thing I didn’t know that genital herpes, you carry it after you get it…and you can have outbreaks…and [are] more susceptible to transmitting HIV…I have a boyfriend…he’s HIV negative and we’re in an open relationship. We have unprotected sex…so now we’re not having unprotected sex. (HMP12, HIV-positive, age 26)

Of note, this man previously talked with his partner about condoms but had not made the decision to use condoms until after his involvement with HMP.

The goal setting feature of HMP—My Life, My Goals—was also popular among participants for facilitating behavior change related to exercise and nutrition.  For example, one participant credited this feature and suggestions from the Forum with his return to the gym and losing 10 pounds (HMP03, HIV-negative, age 30). Another participant used resources from HMP to start a food journal and was able to begin losing weight toward his fitness goals (HMP13, HIV-positive, age 29).

One man described how the educational articles and the Ask Dr. W forum inspired him to try switching from traditional cigarettes to electronic cigarettes (HMP11, HIV-positive, age 26). Similarly, a number of participants described how information and quizzes on HMP helped them identify the roles that drugs and alcohol played for them in doing unsafe things and two men used resources on HMP to find local assistance programs for substance use (HMP04, HIV-negative, age 29; HMP05, HIV-negative, age 23).

A key feature of the Stages of Change model is “cues to action”. The House of Mpowerment articles, Know Your Risk screeners, and My Life, My Goals applications all provide suggested action steps toward changing a specific behaviour and recommended resources to execute each action. Some participants described how user reviews and suggestions in the Local Scene provided trusted, useful information that helped them make decisions about where to go for testing or finding a gay-friendly venue to socialise. Our analysis showed that HMP participants also became cues to action for each other through sharing experiences in the Forum and Getting Real, and to their peers outside of HMP. As one participant explained: “I ask my friends now, ‘do y’all use condoms?’” (HMP05, HIV-negative, age 23). We found that HMP also provided positive reinforcement which can operate as a cue to future action; one participant described a sense of pride at having his videos online: “I look so good!” (HMP03, HIV-negative, age 30). HMP’s text and email message reminders also served as cues to action. These messages encouraged logging on, highlighted site sections and new material, or wished users a fun and safe weekend.

Maintenance

Our analysis found that HMP supported users who were maintaining positive behaviour changes by providing continued social support, advanced information and resources, and strategies for reinforcing healthy behaviours. In the Forum, some participants were motivated to respond to other users’ comments: “I was shocked! Somebody actually feels that way? I can answer that question from experience. It wasn’t just me taking from the site, but I was also giving to the site as well” (HMP01, HIV-positive, age 29). Forum discussions helped empower users who had more experience dealing with an issue – such as sexuality or HIV – to support those who were less experienced. By sharing in this way, participants also reminded themselves of their own progress and reinforced their positive behaviours: “[The Forum] related to me…to see these people reaching out for help and being able to talk about it…it reminded me, I’ve been through it too, and that’s where I will give advice in the Forums: It all gets better” (HMP07, HIV-negative, age 23). Another participant echoed this sentiment as he explained, “Reading about what others posted about being newly diagnosed brought me back to that place, ok, I already got over that, I already dealt with that” (HMP15, HIV-positive, age 25). Participants who were already practicing positive sexual health behaviours described how information on HMP provided a new perspective and offered new resources to support continued positive behaviours. One man who regularly gets HIV tests explained that using HMP helped him change his attitude about testing from viewing it as a hassle to a regular part of care (HMP03, HIV-negative, age 30).

The majority of users stated that the HMP points and rewards system was highly engaging. As one participant explained, “it made time on the site more personal, made you feel like you were doing something” (HMP06, HIV-positive, age 23, TW). Another participant described the points system as: “A visual representation of your progress on the site” (HMP04, HIV-negative, age 29). The point system motivated participants to use the site via competition: “You’re gonna be on there nonstop because that’s what you’re focused on…I gotta do everything to get these points!” (HMP05, HIV-negative, age 23). Similarly, another man said, “It’s an incentive if they tell me I’m gonna get something for it [points], I’m gonna be on there every single day” (HMP14, HIV-positive, age 30).

Discussion

HMP optimises the benefits of eHealth through its user-driven structure, provision of anonymity and confidentiality, and accessibility anytime, anywhere. HMP provides a framework and mechanisms for participants to encourage each other across the stages of health behaviour change and numerous features contribute to the intervention’s sustainability which is required to support the transition through—and long-term maintenance of—behaviour change. The HMP administrative team and user-driven web structure facilitate and reinforce participants’ movement across stages of behaviour change for their own specific target behaviours at their own pace and comfort level. Participants attributed their behaviour changes to various site features, further emphasising the critical role of user-driven design for facilitating the specific behaviour change that a participant is most ready to embrace.

HMP’s experience sharing and community building features (LeGrand et al., 2014) alongside the gamification features (e.g. reputation points, HMP Store rewards, quizzes) all act as motivators and cues to action (Baltierra et al., 2014; Pike et al., 2014). Furthermore, the self-efficacy fostered by HMP helped instill confidence—a key Stages of Change mechanism (J. O. Prochaska & DiClemente, 1992)—as users tried out new behaviours.

There must be perceived community or social network for positive peer pressure and social norms to operate. Many YBMSM report high levels of stigma and social isolation (Ayala, Bingham, Kim, Wheeler, & Millett, 2012; Bogart, Landrine, Galvan, Wagner & Klein, 2013), which limits opportunities to use social support networks to facilitate healthy behaviours. An interactive, engaging eHealth intervention such as HMP has great potential for addressing this need while also maintaining a comfortable level of privacy and anonymity for YBMSM/TW.

The components of the HMP intervention can be aligned with one or more stages of behavioural change. One strength of the intervention is the plasticity allowed within these sections such that the same activity can address different stages of change for different participants. For example, The Forum could be a first exposure for one man about new ways to communicate HIV status to one’s partners, while for another man it serves as reinforcement of a behaviour already in place. Similarly, the prize items users earn through their virtual interactions that feature the HMP logo (e.g. water bottles, messenger bag, sweatshirt hoodie) could serve as a visual cue to action for a participant who is initiating a new health behaviour, while for another participant in the maintenance phase, the logo serves as a reminder and an opportunity to initiate in-person sexual health conversations. Our analysis lays theoretical groundwork for future quantitative testing of these behaviour change processes through the HMP RCT and other similar projects under development such as the CDC-funded “Project Power” for Black bisexually active men (Maulsby et al., 2013) and Project HOPE for African American and Latino MSM (Jaganath, Gill, Cohen, & Young, 2012).

Conclusion

eHealth interventions for YBMSM/TW have the potential to reach marginalised, at-risk individuals in a novel, more engaging way. For YBMSM/TW in this pilot trial, HMP was a frequently used, highly acceptable means for HIV/STI as well as whole health intervention. HMP showed promise for being able to deliver a sufficient intervention dose and maintain exposure/engagement over time in order to achieve behaviour change, and in this qualitative assessment of 15 participants we found a pattern between the amount of intervention site use and stages of behaviour change. Our findings emphasise the importance of user generated feedback in the design and evaluation of tailored web and mobile phone based interventions. The Stages of Change theory integrated with theories of social support may offer a useful framework for assessing the mechanisms through which web and mobile phone based interventions can achieve and sustain real-world behaviour change. Furthermore, measuring outcomes along multiple stages of behavioural change may help to demonstrate that these interventions have positive impacts on critical earlier stages of behaviour change as well as main study outcomes.

Acknowledgements

This research was supported by the National Institute for Health (NIH) Grant 5R01MH093275. The views expressed herein do not reflect the official stance of any funding agency. We have no conflicts of interests to declare.

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Biographical Statements

Kathryn Muessig, PhD, is an Assistant Professor in the Department of Health Behavior at the Gillings School of Global Public Health at the University of North Carolina at Chapel Hill (UNC). Her research is primarily focused on intervention development to improve the prevention and treatment of HIV and other sexually transmitted diseases in particular among at-risk and underserved populations. Dr. Muessig’s work is divided between North Carolina and China and she is affiliated with UNC’s Institute for Global Health and Infectious Diseases and Project UNC in Guangzhou South China.

Contact: kate_muessig@med.unc.edu

Nina Baltierra is a Research Assistant in the Institute for Global Health and Infectious Diseases at the University of North Carolina – Chapel Hill. She is currently pursuing a Master’s of Public Health and has been working in sexual and reproductive health for seven years.

Emily Pike is a Project Coordinator in the Institute of Global Health & Infectious Diseases at the University of North Carolina at Chapel Hill. Emily’s research focuses on the social, structural, and behavioral factors that drive HIV and other sexually transmitted infections among at-risk population, especially racial and ethnic minority men and transgender women who have sex with men (MSM/TW), and utilising technology to address disparities in care and education. She is trained in qualitative methods for public health research and intervention design and evaluation.

Sara LeGrand, PhD, is an Assistant Research Professor at the Duke Global Health Institute and Center for Health Policy and Inequalities Research with a doctoral degree in Health Services Research. Dr. LeGrand has extensive experience conducting qualitative and quantitative research related to HIV prevention and care with findings published in peer-reviewed journals.  She is currently serves as principal investigator, investigator and evaluator for numerous federally and foundation-funded HIV prevention and care grants. Dr. LeGrand is particularly interested in the design and evaluation of technology-based interventions that address disparities in HIV prevention and care.

Dr Hightow-Weidman, MD/MPH, is Clinical Associate Professor in the Division of Infectious Diseases, Department of Medicine, at the University of North Carolina School of Medicine, has been engaged in clinical and behavioral research focusing on HIV among Black MSM in the southeastern U.S. for more than a decade.  She has expertise in mobile technologies and the design of primary and secondary HIV prevention interventions for young MSM.

Matt Avery, Gang Meng & Stephen Mills

Published Online: July 17, 2014
Full Text: HTML, PDF

Abstract

The internet is an increasingly popular among gay men and other men who have sex with men (MSM) in China for finding sexual partners. Gay men and other MSM who meet online are at high risk for HIV infection, but less likely to visit ‘traditional’ venues where they can receive interpersonal HIV prevention interventions. New virtual models are needed to provide HIV prevention messages and services to these gay men and other MSM. FHI 360 and Guangzhou Tongzhi (GZTZ) piloted separate, but complementary, approaches to using information and communications technology to promote uptake of HIV counselling and testing (HCT) among gay men and other MSM in three Chinese provinces (Yunnan, Guangxi and Guangzhou). These approaches included dedicated websites featuring online risk assessment and appointment making, crowd-sourced service promotion messages and dissemination via participants’ microblog accounts and social media profiles. Reach was measured using Web analytics and traditional monitoring and evaluation tools, and government partners provided data on HCT uptake. The FHI 360 and GZTZ interventions reached 7,000 and 2.3 million unique visitors, respectively, and contributed to increases in HCT uptake of 26% and 66% as well as to higher rates of HIV case finding. Internet-based interventions like those conducted by FHI 360 and GZTZ represent a promising channel for engaging otherwise difficult-to-reach gay men and other MSM in China.

Keywords: HIV, men that have sex with men, MSM, ICT, HIV Counselling and Testing, China

Background

A 2008-2009 survey of 61 Chinese cities indicated a nationwide HIV prevalence of 5% among men who have sex with men (MSM),  though specific provinces reported notably higher prevalence, including Yunnan province at 10.9% (Wu, et al., 2013). Since that study was conducted, the China Ministry of Health in 2011 estimated prevalence among this population to be 6.3%, suggesting the epidemic continues to expand (China Ministry of Health, 2012). HIV testing and counselling (HTC) is a key entry point into the cascade of prevention, treatment, care and support for people living with HIV(Hull, Wu, & Montaner, 2012; Kilmarx & Mutasa-Apollo, 2013; Sullivan, et al., 2012); however, increasing HIV prevalence in the MSM population has not resulted in sufficiently increased rates of HIV testing among Chinese MSM. Despite HIV counselling and testing (HCT) services being provided free of charge by the Chinese government, as of 2011 half of Chinese MSM had not received an HIV test within the previous 12 months(China Ministry of Health, 2012). Specific barriers to increasing HTC uptake among Chinese MSM include perceptions that available services are low-quality and discriminatory(USAID/Health Policy Initiative, 2009; Yu, An, & Tong, 2009).Testing behaviour among MSM is also influenced by community norms –a 2010 behavioural  survey among MSM indicated that individuals were more likely to get tested themselves if they perceived testing as a norm among their peers (Population Services International (China), 2010).

Information and communications technology (ICT) platforms including websites, social media and microblogs, are one channel for promoting HTC services since the Internet has become an increasingly popular means of finding sexual partners for MSM in China as well as globally(Lim, Guadamuz, Wei, Chan, & Koe, 2012; Zhang, et al., 2007). Reaching these men with HIV prevention services may be particularly important as studies conducted in China and elsewhere have suggested that MSM who seek sexual partners online may be at higher risk for HIV infection due to a greater likelihood of engaging in unprotected anal sex(Berg, Tikkanen, & Ross, 2013; Grov, 2012; Parsons, Vial, Starks, & Golub, 2013; White, Mimiaga, Reisner, & Mayer, 2013; Zhang, et al., 2007), higher rates of sexually transmitted infections(Lau, Kim, Lau, & Tsui, 2003), or a greater likelihood of having multiple and concurrent sexual partners(Chew Ng, et al., 2013; Li, et al., 2012; Rosser, Miner, et al., 2009; Rosser, Oakes, et al., 2009; Young, Szekeres, & Coates, 2013; Zhang, et al., 2007). While the 61-city survey in China did not find a specific link between Internet use and HIV prevalence, that study did indicate that MSM who interact primarily online are likely to be younger and better-educated than other MSM – the authors suggested that the young age of Internet users could mask undetected, acute infections (Wu, et al., 2013). Further, many MSM who use the Internet to “cruise” for partners never visit or seek sexual partners in traditional gay venues(Saxton, Dickson, & Hughes, 2013). The Internet may thus provide a medium to gain access to a subpopulation of MSM who are at especially high risk, do not necessarily have strong social networks with the local gay community, and are thus not reached by traditional, venue-based peer outreach activities.

Aim

Several organisations working in China have piloted what is referred to as an “online-to-offline (O2O)” model where populations of MSM are targeted over web-based platforms where they interact, with the goal of initially engaging these men online in order to foster eventual in-person interaction, including uptake of HIV counselling and testing and sexual health services. In this paper, we present and compare two specific approaches to social media strategies, their evaluation designs and metrics on reach and effectiveness, and options for the future.

Social and Antisocial Media: Two ICT approaches

Yunnan and Guangxi provinces (pop. 46.31 million and 46.45 million, respectively), in southwest China, are among the highest HIV prevalence provinces in the country, with a number of community-based organisations conducting HIV prevention education, HTC referral and community-based testing in both provinces. The six-month “Xiu Boy” campaign was launched by the USAID-funded Spring Rain and Green City Rainbow MSM community-based organisationss in the provincial capitals of Kunming and Nanning, respectively, in order to increase MSM dialogue around and uptake of HTC services. The centrepiece of Xiu Boy was a microsite which hosted HTC information; an online, anonymous HIV risk calculator; and a “digital video” competition wherein participants shared videos of themselves talking about testing across their social media networks (SinaWeibo, RenRen.com, and 56.com among others) and encouraged their friends to vote for their favourite video. The campaign was additionally integrated into traditional outreach programming, with trained peer educators promoting the Xiu Boy microsite at MSM “hot spots” including bars, bathhouses and public parks and organizing special campaign events including a launch party and “Show Your Best Self” underwear show.

Guangzhou (pop. 12.78 million), the capital of Guangdong Province in southern China, is roughly twice the size of Kunming or Nanning, with a larger and more cosmopolitan MSM community. Guangzhou Tongzhi (GZTZ) has operated an LGBT-themed website since 1998, and has partnered with the Guangzhou CDC to offer community-based HTC since 2008. In contrast to the Xiu Boy campaign, which integrated in-person interaction and encouraged open experience sharing via social media, GZTZ built an ICT platform which consciously limits the human interaction necessary to promote HIV testing: online games encourage self-efficacy and responsibility, a self-risk evaluation targets awareness of personal-risk and decision-making, online ads publicise services and user-friendly tools facilitate appointment making and deliver testing reminders.
While these interventions took different approaches to harnessing web-based platforms for HCT promotion, they also shared several points in common. Both combined innovative web-based approaches with more traditional service promotion activities; both tied service promotion to service delivery through specific partner agencies, and both partnered with local government (municipal centre for disease control and prevention) to deliver these services.

Evaluation designs and metrics

The two social media projects utilised a variety of designs and metrics to measure their penetration into MSM networks and to estimate their impact on service utilisation. Both used Google Analytics to track data on website usage (site visits, site visitors, % new visits, page views and bounce rate).

Users were directed to the Xiu Boy online risk calculator either via the website home page or else via paid banner ads, displayed on a number of for-profit gay Chinese websites, which linked directly to the calculator. The calculator collected data on website users’ self-identified gender, partners’ gender, number of sexual partners within the last six months, and specific risk behaviours (sex with strangers; commercial sex; sex while under the influence of drugs or alcohol; injection drug use; unprotected oral, anal and vaginal sex) and health-seeking behaviours (STI screening and HIV testing). Frequencies were calculated for these measures using SPSS (Version 11.0), in order to build a risk profile of website users who completed the risk calculator.

Levels of risk as reported by the risk calculator were based on a simple calculation of the number of risk or health-seeking behaviours in which an individual reported engaging. Each individual behaviour (male-to-male sex, multiple sexual partners, sex with unknown partners, commercial sex, STI check-up, sex under the influence of drugs or alcohol, needle sharing, HIV testing, unprotected anal or vaginal sex) was assigned a point value (0-15 points) with particularly risky behaviours (commercial sex, needle-sharing, unprotected vaginal/anal sex) automatically assigned higher values. Final summative scores of 0-2 points were considered minimal risk, 3-4 were considered somewhat risky, 5-14 were considered of moderate risk, and scores of 15 or above were considered high risk. This methodology was adapted from similar risk calculators used in other HIV interventions; however, it was primarily intended to generate increased risk perception among campaign participants and not intended to accurately reflect statistical levels of HIV risk.

Use of the risk calculator was tracked via I.P. address. In order to avoid double-counting of respondents, the database was screened for multiple instance of the same I.P. address. In all cases of multiple entries from the same I.P. address, the entry with the earliest time stamp was retained and all others were removed from the data set. This was based on the assumption that a website user was most likely to respond to risk calculator questions accurately on their first completion of the survey, and then experiment on subsequent attempts with changing their responses to see how it affected the results of their risk calculation.

The digital video competition was evaluated according to the number of videos posted by website users and the number of “Likes” recorded by the website for each video, as tracked via unique I.P. address. Only the first instance of a unique I.P. address was recorded for the purpose of calculating total number of Likes.

The number of individual MSM reached by the Xiu Boy campaign with campaign messages via face-to-face interaction with a project-trained peer educator was tracked using standardised monitoring and evaluation data collection forms. In order to avoid double counting of project clients reached by multiple peer educators, or by the same peer educator multiple times, these data distinguish between “new” and “follow-up” contacts using the recall method so that the total number of persons “reached” is specific to the individual service rendered and does not mix new and repeat clients. GZTZ did not conduct traditional, face-to-face “outreach” activities.

For both interventions, the number of MSM who accessed HIV testing services at an affiliated testing site and received their test result, and the number of MSM tested positive through campaign-affiliated testing sites was recorded through standardised data collection forms. GZTZ was also able to collect data on the number of individuals confirmed positive through Western Blot confirmatory testing, and the number of positive individuals successfully referred to follow-up care, through their partnership with the Guangzhou Municipal CDC. However, antiretroviral treatment (ART) in China is managed through a separate (non-CDC) hospital system; thus, data on ART initiation and maintenance are not reported for clients referred for treatment through these interventions.

Results

Using the above-described metrics, we present the most recently available data and indicators of both the Xui Boy and GZTZ websites and approaches in Table 1 (below).

Table 1. Usage statistics for Xiu Boy and GZTZ websites.

Intervention Site Visits Unique Site Visitors Page Views Bounce Rate
Xiu Boy
(April-Sept. 2011)
9,461 7,082 40,566 53.45%
GZTZ (Jan.-Dec. 2012) 6,679,707 2,298,808 48,899,134 33.67%

For the purposes of these interventions, “site visits” refers to the total number of visits to the specified website, and “page views” refers to the total number of times individual pages within the website were visited. “Unique site visitors” refers to the number of unique individuals who spent time on any page of the website, whether they did so once or multiple times, though this information is subject to data collection errors. The number of unique site visitors is tracked by Google Analytics using “cookies” – small pieces of information installed on a computer when it visits a website, allowing the website to recognise that computer on subsequent visits. If a returning website visitor deletes the cookies stored on their computer, or uses a different machine or Internet browser to visit the site, they may be misclassified as a new unique visitor; thus, Google Analytics tends to place more importance on total site visits.

“Bounce rate”, finally, represents the number of visits when users leave your site after just one page, regardless of how they got to your site or how long they stayed on that page. There are a number of potential explanations for a high bounce rate, including that visitors received the information they needed after visiting only one page, that they visited the site in error or were not interested in the website content, or that they experienced design or usability issues with the website.

XIU BOY campaign

The Xiu Boy campaign ran for six months (April through September 2011) and the social media digital video competition was conducted for the 2nd half of the campaign. During the campaign period there were a total of 9, 461 site visits, with 7,082 unique site visitors and 40,566 page views. The most popular pages by page views, outside of the main landing page, were Information for HIV-positive Individuals, Online Risk Calculator, and Information on Finding a Testing Centre. These figures do not include visitors to the separate web page that hosted the digital video competition.

74.47% of visits to the Xiu Boy website were new visits, and the average user visited roughly 4 pages per visit. The bounce rate (percentage of visitors who enter the site and “bounce” – leave the site – rather than continue viewing other pages within the same site) was 53.45%.

99% of site visitors were from China. Of those visitors, 57% were from the targeted campaign cities, and 70% came from the target provinces. Traffic from outside of the target cities is also significant as MSM from the countryside commonly travel to the provincial capital to access healthcare and other services.

During the campaign period, trained peer educators additionally reached 1,799 MSM through either one-on-one outreach, small group activities, or large-scale community events. While outreach activities were not all specifically related to the Xiu Boy campaign, peer educators were trained to provide campaign messages and promote the website through all outreach encounters. It was not possible to estimate what percentage of individuals reached with one-on-one outreach were also reached via the campaign website.

Online Risk Calculator.961 site visitors accessed the online risk calculator and 904 (94%) completed all items. Of those who completed the calculator, based on their answers to the survey items, 88.9% were at medium or high risk for HIV infection.

Table Two. Xiu Boy Campaign: Characteristics of website visitors who used the anonymous risk calculator (n=961)
n (%)
Gender (n=961)
Male 948 (98.6%)
Female 6 (0.6%)
Transgender 7 (0.7%)
Partners’ gender (n=912)
Male 703 (77.1%)
Female 48 (5.3%)
Both 161 (17.7%)
No. Sex Partners Last 6 Months (n=876)
0 108 (12.3%)
1 235 (26.8%)
2-4 376 (42.9%)
5-10 102 (11.6%)
>10 55 (6.3%)
Sex with a Partner You Do Not Know (n=862)
No 221 (25.6%)
Yes 641 (74.4%)
Engaged in Commercial Sex (n=848)
No 666 (78.5%)
Yes 182 (21.5%)
Sex under the Influence of Drugs or Alcohol (n=831)
No 712 (85.7%)
Yes 119 (14.3%)
Shared Injecting Equipment to Use Drugs (n=824)
No 818 (99.3%)
Yes 6 (0.7%)
Tested for STIs (n=841)
Yes (w/in last 6 months) 145 (17.2%)
Yes (not w/in last 6 months) 185 (22%)
Never Tested 511 (60.8%)
Tested for HIV (n=812)
Yes (w/in last 6 months) 133 (16.4%)
Yes (not w/in last 6 months) 179 (22%)
Never Tested 500 (61.6%)
Sexual behaviour
Oral Sex
Performed Oral Sex on Partners 650 (67.6%)
Consistently Used Condoms when Performing Oral Sex 32 (4.9%)
Received Oral Sex from Partners 657 (68.4%)
Consistently Used Condoms when Receiving Oral Sex 26 (4%)
Anal Sex
Penetrated Partner Anally 499 (51.9%)
Consistently Used Condoms when Penetrating Partner Anally 177 (35.5%)
Penetrated Anally by Partner 474 (49.3%)
Consistently Used Condoms when Being Penetrated Anally 168 (35.4%)
Vaginal Sex
Penetrated Partner Vaginally 115 (12%)
Consistently Used Condoms when Penetrating Partner Vaginally 30 (26.1%)
Risk Profile (n=904)
Minimal Risk 54 (6%)
Some Risk 47 (5.2%)
Medium Risk 317 (35.1%)
High Risk 486 (53.8%)

The majority of risk calculator users self-reported as males (98.6%, n=948) who only had sex with other men (77.1%, n=703). Among those website users who reported engaging in anal sex, 35.5% (n=177) reported consistent condom use as the penetrating partner and 35.4% (n=168) reported consistent condom use as the penetrated partner. A significant minority of users (17.7%, n=161) reported sex with male and female partners, and among those who reported penetrating their partner vaginally only 26.1% reported using condoms consistently.

The majority of users (54.5%, n=478) reported between 2-10 sexual partners within the last six months, and 74.4% (n=641) reported having sex with partners they did not know.

Despite high levels of reported sexual activity and relatively low levels of consistent condom use, 60.8% (n=511) of risk calculator users reported having never been screened for sexually transmitted infections, and 500 (61.6%) had never been tested for HIV (22% had been tested, but not within the last year).

Digital Video Competition

In total, 48 videos were uploaded for the digital video competition and 6,673 total votes were cast – voting was only permitted during the final month of the campaign to avoid privileging videos which were posted earlier. The winning video collected 1,745 votes while the first runner-up received 1,347 votes.

Due to a technical error, page views attributed to the digital video competition were not included in the total views or visitor counts for the Xiu Boy website, which might otherwise have contributed significantly to increasing those numbers as social media viewers could link directly from a video to the competition page. However, the video competition still drove increased traffic to other content on the main Xiu Boy site – during the competition the site recorded just over 6,000 visits (4,466 unique visitors) an increase of 128% over the three-month period preceding the competition.

HIV Counseling and Testing

During the Xiu Boy campaign period, HCT uptake by MSM for the three affiliated clinical sites increased by 26% (from 896 to 1135) and the number of positive cases identified increased by 22% (from 57 to 70) when compared to the previous six-month period. As can be seen in Chart 1 (below), most of the increase in HCT uptake is attributable to the Guangxi campaign site (Site 3), which accounted for 82% of all testing conducted during the campaign period, a 33% increase over the previous six-month period as compared to the 3% increase in testing uptake in Yunnan (sites 1 and 2, combined).

Table 3.HIV testing uptake during the Xiu Boy campaign.

FY11 Q1-Q2 FY11 Q3-Q4
Tested/Tested + Tested/Tested+
Site One 64/13 58/8
Site Two 136/6 148/9
Site Three 696/38 929/53
Total 896/57 1,135/70

GZTZ

An O2O procedure has been developed by GZTZ since 2008 to support MSM in accepting HIV tests and relevant services. Its main components include:

  • An online service module aimed at encouraging, reinforcing and validating safer sex behaviours and awareness of HIV testing by providing information on HIV prevalence and service promotion, offering a self-service risk evaluation tool, and conducting embedded vignette-based interventions;
  • A link between online and offline services (testing and results delivery), to mitigate clients’ unwillingness to receive an HIV test and to advocate for testing among sex partners of newly diagnosed HIV-positive clients by maintaining an online appointment and notification system, self-service results query, and anonymous partner notification;
  • An offline services module to boost clients’ confidence regarding service quality through provision of CBO-based pre- and post-test counseling, rapid testing, and supportive services for HIV-positive individuals.

During calendar year 2012, the GZTZ website received a total of 6,679,707 visits, made by 298,808 unique visitors, who made 48,899,134 page views. Not only did the site (which was more established than the Xiu Boy site) generate significantly more traffic, the bounce rate of 33.67% was noticeably lower, indicating that a higher percentage of those visiting the site actually intended to do so.

Over the course of 2012, GZTZ conducted 5,389 HIV screening tests for MSM, an increase of 130.5% since 2010. Of those MSM tested, 8.57% (n=462) were screened positive, which reflects a 33.76% increase in the 2010 case finding rate (5.1%, n=119). The Guangzhou CDC testing algorithm for members of high-risk populations is a single, rapid HIV screening test followed by Western Blot confirmatory testing which is processed off-site by the CDC. Of those individuals screened positive through the GZTZ service, 90% (n=416) agreed to receive an HIV confirmatory test, and 75% (n=312) were notified of a confirmed positive result. Of the 25% of clients screened positive who did not receive a confirmatory test result:

  • 5.5% (n=23) were found through ID tracking to have already been confirmed positive and thus not re-tested,
  • 2.4% (n=10) received a confirmatory test but were later determined to have been previously confirmed HIV-positive and, thus, not recounted as “new cases”
  • .48% (n=2) were found to be false positives,
  • 16.6% (n=69) did not receive their confirmatory test results within the reporting period, though they may have been informed of their test results at a later date.

CD4 testing is also provided by the CDC (and ART treatment centre) for all confirmed HIV-positive individuals, regardless of where they received their HIV test. Among those GZTZ clients who did receive their confirmatory test result, 12.5% were reported by the Chinese government not to have received a follow-up CD4 test.

Table 3. HIV testing and referral to care and treatment by GZTZ

2012 2011 2010
Received HIV screening (3 affiliated sites) 5,389 3,247 2,338
Screened positive 462 275 119
Agreed to receive conformatory tests 416 N/A N/A
Non-duplicate clients who received confirmatory test 383 179 73
Confirmed to be newly found HIV+ 312 166 59
HIV+ & received CD4 count tests 273 N/A N/A

Screen Shot 2014-07-17 at 00.27.54

Additionally, while there are a number of different community-based organisations that partner with the Guangzhou CDC to offer HIV counselling and testing for MSM (see Figure 1, below), in calendar year 2012 GZTZ was responsible for roughly 83% of all clients screened for HIV within Guangzhou City who identified themselves as MSM.

Screen Shot 2014-07-17 at 00.27.27

Figure 1. MSM screened for HIV in Guangzhou City, 2012

Discussion

Findings and results from both social media approaches support the hypothesis that web-based platforms can be an effective channel for the promotion of HTC services for MSM in China. Internet-based approaches in China have typically recreated traditional, venue-based outreach practices – the development and distribution of promotional materials, peer education etc. – and recreated these approaches while treating websites and chat rooms as a kind of “virtual venue.” While this approach has its advantages in that it is possible to apply existing tools and manpower with limited need for adaptation or training, the Internet can be a more efficient tool when interventions make use of the unique advantages of this medium. Both approaches described in this paper took different approaches which limit the need for a trained cadre of semi-professional peer staff. GZTZ sought to automate intervention services in order to minimise or completely remove the need for direct human involvement – for instance, a telephone hotline was originally established to help online staff interact with clients; however, calls to the hotline decreased dramatically once dedicated software was put into place allowing users to make appointments and receive transportation directions and service reminders.

In contrast, the Xiu Boy campaign sought to supplement the provision of information about HIV transmission and prevention delivered by trained and employed peer educators with positive normative statements about the desirability of knowing one’s HIV status, which were disseminated by regular service clients and propagated virally through their online social networks. The Xiu Boy microsite additionally allowed potential (but hesitant) clients to view photographs and digitally-recorded introductions of clinic staff, facilities and procedures as well as client testimonials about participating HCT service centres without the need to actually visit a clinic, thus reducing what are sometimes termed the “entry costs” for counselling and testing – fear, discomfort, embarrassment – without the need for direct human intervention. Critically, information collected through the Xiu Boy risk assessment tool indicates that testing information delivered via the website reached a population of men who have never (or not recently) received an HIV test despite engaging in unprotected anal sex either as the penetrating or penetrative partner.

These interventions also demonstrate that evaluation is essential to the success of any public health intervention, and freely available tools like Google Analytics can greatly simplify the process of collecting and analysing monitoring data for web-based intervention activities. However, the greatest obstacle to effective monitoring and evaluation isn’t collecting extensive user engagement data such as the number of “Likes” or the website bounce rates; the key obstacle is a failure to determine what return on investment the online strategy is intended to generate in the first place. It may be tempting to envision web-based metrics as an end unto themselves, but this approach fails to acknowledge the reach and impact of broader communications activities (Gordon, 2013). Rather than thinking in terms of internet metrics versus traditional public health indicators, monitoring and evaluation systems should focus holistically on the overall goal (in this case, HCT uptake) and then identify the best indicators to determine whether intervention strategies are working.

A key barrier to integrating Internet metrics more holistically into monitoring and evaluation  frameworks, however, is the difficulty in tracking unique contacts across virtual and physical engagements, and the primacy in many monitoring and evaluation frameworks (for instance, the UNGASS and PEPFAR indicators) for real-life contact. More research is needed to determine how “virtual” contacts and measures of engagement can best be integrated into these frameworks so as to highlight the increasing relevance and importance of digital interactions.

Coordination between community-based organisations and the municipal government was critical to the success of the GZTZ and Xiu Boy interventions. Across the Asia-Pacific region it is estimated that as many as half of all members of key affected populations are unaware of their HIV status (UNAIDS, 2012),and while community-based HTC is recommended by the WHO (WHO, 2012) and has been demonstrated to be highly acceptable to testing clients (Suthar, et al., 2013), there are numerous policy barriers to adopting this strategy across the region, including in China. The interventions reviewed here contributed to increased service uptake without significant loss to follow-up, false positivity or reported adverse events (breaches of confidentiality, etc.) and thus further demonstrate the potential key role CBOs can play as partners to the China CDC in increasing the number of MSM who know their status and access care and treatment in line with the national strategy.

Two key links in the cascade of HIV prevention to care and treatment which did exhibit worrying loss to follow-up were in the gaps between clients screening positive for HIV infection, receiving a confirmed positive result, and receiving a CD4 test for assessing ART readiness. The current Chinese testing algorithm calls for expensive and technically demanding Western Blot confirmatory testing which typically delays provision of results by one to two weeks, but in some cases more than a month, delaying access to pre-ART staging and treatment initiation and potentially contributing to loss to follow-up. Delays in administering CD4 tests may be an additional barrier to treatment initiation. It is necessary to advocate for the adoption of newer confirmation strategies which would reduce or eliminate wait times for test results (Styer, Sullivan, & Parker, 2011)such as scaling up the use of point-of-care CD4 tests in selected community-based testing centre settings (Jani, et al., 2011; Mtapuri-Zinyowera, et al., 2010), which would help to move clients more efficiently through the HIV care continuum.

Finally, the interventions reviewed here also demonstrate that many people underestimate the human resources and skills needed to develop and sustain a technology- driven intervention. It is worth noting that, of the two intervention sites participating in the Xiu Boy campaign, the Guangxi site far outperformed the Yunnan site terms of testing uptake. This disparity is unlikely the result of differences in service delivery model (both sites offered community-based rapid testing, while only Yunnan additionally offered clinic-based testing) or HIV risk (reported HIV prevalence is in fact significantly higher in Yunnan than Guangxi). However, the implementing team in Guangxi was younger and more social media savvy, as evidenced by team members having their own, pre-existing social media accounts and having significantly more success attracting social media followers and soliciting submissions for the digital video competition. Guangxi additionally accounted for 45.12% of all visits to the Xiu Boy website during the campaign period, as compared to 23.8% from Yunnan.

As the experience of these two programs shows, launching and supporting an Internet-based intervention requires a Web- and social media-savvy communications team who are comfortable working within the platforms the intervention will target, project managers who understand the possibilities and limitations of these technologies, community experts who are in tune with community needs and preferences, administrators who can maintain strong control over the workflow, and a well-trained team of service providers. The unique skill sets needed to design, manage and monitor Web-based and social media activities may not always be available within one organisations but will require several who bring distinct expertise to a well-planned consortium.

Limitations

There are a number of limitations which should be taken into account when interpreting the above results: most notably that, as neither intervention used a rigorous evaluation design, the influence of confounding variables cannot be discounted when considering the demonstrated increase in HIV testing rates. Potential confounders may include other HIV prevention and test promotion activities (peer education, media coverage etc.) taking place concurrent with the GZTZ and Xiu Boy activities, or the influence of major seasonal events in the Chinese calendar, such as Spring Festival.

Data reported on the risk and health-seeking behaviours of visitors to the Xiu Boy website must also take into account that, since these data come from a convenience sample, they are not representative either of the wider population of MSM or of all MSM who visited the website. It is also possible that website visitors who declined to complete the risk assessment tool systematically differed from those who completed the assessment in key variables. It should also be noted that this data represents self-reported behavioural data; MSM who completed the assessment may have been motivated by reason of social desirability bias to report safer levels of behaviour than they actually practice. However, participant self-report is a widely used methodology in behavioural research, and studies have suggested that instruments such as Internet-based surveys which do not feature face-to-face interaction may reduce the influence of social desirability bias(Kreuter, Presser, & Tourangeau, 2008). Further, self-reported levels of sexual risk behaviour were broadly similar to behaviours reported in Zhang (2011) and Zu (2013) with the exception that a much higher proportion of Xiu Boy visitors reported having engaged in commercial sex (21.5% versus 5.8% and 5.7%, respectively).

Conclusion

Despite content restrictions and the limited reach of some key global services (i.e. Facebook, YouTube and Twitter) inside of China, information and communication technology platforms, including microsites, online games, digital videos and social media represent an important channel for reaching Chinese MSM and can contribute to increased HTC service uptake and case finding. Indeed, ICT strategies which generate service demand and facilitate service delivery are likely to grow in importance as target audiences increasingly shift to online interactions and funding for resource intensive, venue-based strategies becomes limited. Successful online intervention models hold the promise not only of increased coverage, but also of relatively simple scale-up. It is, however, important not to underestimate the level of resources and technical skill required to implement and sustain these interventions and the importance of partnership and collaboration with governments and service providers if promotion is to translate into service uptake. Finally, it is critical that these interventions be planned with robust monitoring and evaluation measures in place, and that existing monitoring and evaluation systems evolve in order to capture the added value of online intervention activities along with more traditional models such as venue-based peer outreach, in order to further develop an evidence base in support of ICT intervention models.

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Biographical Statements

Matt Avery is a Regional Technical Advisor on Strategic Behavioural Communications with the FHI 360 Asia-Pacific Regional Office in Bangkok, Thailand. He has been working in HIV prevention with MSM and other key affected populations for more than 10 years.

Contact: MAvery@fhi360.org

Gang (Roger) Meng is a head of a Lingnan Huoban a CBO working with MSM and the LGBT community in China. By implementing Internet-based strategies, Lingnan Huoban provided 21,038 HIV tests to MSM during 2008-2013 in Guangdong Province. The CBO was awarded an “Advanced Group” by the Ministry of Health of China in 2013, which is the only grassroots organisations among all of the 156 award-winners.

Stephen Mills, PhD, MPH is Technical Director, Health, Population, and Nutrition, with the FHI 360 Asia-Pacific Regional Office in Bangkok, Thailand. He has been working in HIV programming, capacity building and surveillance for over 20 years.

Matt Avery, Gang Meng & Stephen Mills
Published Online: July 17, 2014
Full Text: HTML, P

Benjamin Hanckel, Laurindo Garcia, Glenn-Milo Santos & Eric Julian Manalastas

Published Online: July 17, 2014
Full Text: HTML, PDF

Abstract

HIV-positive gay men and other men who have sex with men (MSM) experience sexual stigma, HIV-related stigma and isolation that can function as barriers to accessing information related to HIV. Little is known about how these men utilize and use technology to overcome these barriers. This study sought to explore technology use and identify key technological concerns of this population through a survey among 119 HIV-positive MSM. This survey was part of a formative assessment undertaken at the initial stage of the development an information and communications technology (ICT) resource and peer-support web-app for HIV-positive MSM in Southeast Asia. In this assessment, we found that HIV-positive MSM lack access to HIV-related support and resources. In particular, we observed that younger MSM (<30) and those diagnosed with HIV within the last year were less likely to report having friends living with HIV compared to older MSM and those without a recent HIV-diagnosis, respectively. These men expressed a need for ICT services that afford opportunities for social connection and resource sharing as well as information related to legal and health care resources. These findings illustrate the capability deprivations experienced by HIV-positive men. Using Amartya Sen’s capability approach we argue that developing an ICT resource can begin to address the deprivations and information deficiencies of HIV-positive MSM by enhancing peer support and increasing access to HIV-related information and resources.

Keywords: HIV, Stigma, ICT, Technology, Asia, Capability Approach, HIV-Positive MSM

Introduction

Gay men and other men who have sex with men (MSM) globally face institutions, policies, and discourses that continue to position their same-sex attraction and intimate relationships as negative (Hammack, Thompson, & Pilecki, 2009; Herek, 2007). This homonegativity works to marginalise MSM and in many contexts lays the grounds for legislation that criminalises their sexual activities (Csete & Dube, 2010) and expression. At least 76 countries worldwide, and at least 5  countries within Southeast (SE) Asia, continue to criminalise same-sex sexual behaviour among consenting adults, with punishments ranging from fines, to imprisonment, or even death sentences (Itaborahy and Zhu, 2013).

This marginalisation is particularly concerning for HIV-positive gay men and other MSM who face stigma associated with their sexual activity and expression, their gender identity and expression, as well as their HIV status. For HIV-positive MSM the perceived stigma can result in a feeling of guilt or shame and if their status becomes known they could experience discrimination and verbal abuse (United Nations, 2011), including from other MSM (Smit et al., 2012). This paper takes the starting point that information and communication technology can support and empower such populations. At present no transnational ICT resource for HIV-positive MSM exists within SE Asia to address this regional HIV epidemic. B-Change Foundation, a non-profit civil society organisation based in the Philippines identified this gap and is developing an ICT resource called PLUS to connect HIV-positive MSM to resources and support to enhance their lives. The development of this resource began with a formative assessment that included a survey to further understand the needs of HIV-positive MSM in SE Asia. The paper reports on the findings from this assessment.

Background

The Affordances of Network Technologies

Through providing people with opportunities to come together, the Internet has ‘…afforded greater involvement in communities of shared interests’ (Wellman, 2001, p. 247). These communities are not constrained by propinquity and can be conceptualized as ‘cyberplaces’ (Wellman, 2001) or ‘networked publics’ that provide distinct affordances for people to gather and connect with similar others (Boyd, 2011).

These spaces afford particular opportunities for those who have been marginalized by ‘mainstream society’. Research has shown that same-sex attracted and gender-diverse young people (Hanckel & Morris, 2014; Paradis, in press), BDSM  community participants (Rambukkana, 2007) and crossdressers (Ferreday & Lock, 2007; Hegland & Nelson, 2002) engage in online spaces for social connection, resources, and identity formation. These spaces afford people living with marginalised identities the opportunity to find similar others in anonymous spaces that are not restricted by temporal and geographic boundaries.

Similarly, research with HIV-positive individuals has found that online spaces provide them with opportunities to be exposed to information and resources about HIV, as well as to connect with other HIV-positive people (Bar-Lev, 2008; Courtenay-Quirk et al., 2010; Drushel, 2013). In doing so these spaces act as supportive environments, which Chenard (2007) argues are crucial for people living with HIV because they function as supportive spaces that protect individuals from stigma and allow them to feel and act ‘normal’. These spaces afford opportunities for brokering new forms of social capital between participants (Drushel, 2013). Social capital occurs here in the form of specific ties that are created between these HIV-positive MSM. In this sense, social capital refers to the resources and benefits that are derived from a network of connections with peers (Bourdieu, 1986; Beaudoin & Thorson, 2004). These connections can lead to support and positive outcomes for people living with varied health concerns (Beaudoin & Tao; 2007; Chung, 2014). Specifically, for HIV-positive MSM, online spaces have been shown to not only reduce feelings of isolation, but they also provide opportunities for individuals to give and receive support and derive positive meanings about living with HIV (Mo & Coulson, 2010; Mo & Coulson, 2013).

There is also evidence to suggest that these online spaces lead to positive coping benefits and increased self-care self-efficacy for HIV positive people who use them (Mo & Coulson, 2010, 2012). Engagement in these spaces can increase participants’ adherence to ART (Samal et al., 2011) as well as provide individuals with the tools and efficacy to address their lived experiences of marginalisation and engage in varied forms of activism (Reeves, 2001). These forms of online engagement have the potential to lead to an increased quality of life for HIV-positive MSM; however more research is required to understand how well these findings hold true for MSM in low to middle income countries (Scanlon & Vreeman, 2013).

This sharing of information and resources between participants can be conceptualised as ‘subcultural knowledge.’ Recent research (Hanckel & Morris, 2014; Munt, Bassett, & O’Riordan, 2002) has shown how online spaces can play a peer-based mentoring function whereby more self-aware or experienced participants provide advice and support and pass on forms of ‘subcultural knowledge’ to others in the community. In this way these online spaces operate as a ‘… forum for the transfer of (sub)cultural capital’ (Munt et al., 2002, p. 130). In a similar way, HIV-related online spaces afford individuals living with HIV the opportunity to acquire new forms of knowledge about HIV and come together to debate and discuss moral dilemmas of living with HIV/AIDS (Bar-Lev, 2008; Mo & Coulson, 2013; Rier, 2007). However these online spaces may be more likely to transmit dominant discourses about life with HIV to the exclusion of alternative discourses and narratives (Bar-Lev, 2008; Sandaunet, 2008). In Rier’s (2007) work on discussions of HIV disclosure online, he shows how the participants “…police online discourse to mark and attack positions they deem immoral and dangerous” (p. 1053). This hierarchy of subcultural capital (Jensen, 2006) presents limitations and constraints to the possibilities of users on these sites. As Rier (2007) suggests, discourses online are likely to reinforce offline behaviours, and likely to impact people’s values as well. This point presents an interesting challenge for online programs that aim to assist HIV-positive MSM in navigating their lives living with HIV.

Furthermore challenges in access to, and use of, these websites and web-based applications –- also known as ‘web-apps’ — persist. One major challenge facing ICT projects continues to be the access individuals have to engage with online-based projects (Kalichman et al., 2002). In addition, several other challenges exist for HIV-positive people. One of these is the prevalence of HIV-related Internet sites that provide false and misleading information. Benotsch, Kalichman, & Weinhardt (2004) in their study, that explored how HIV-positive individuals obtain health information online, found that those from lower socio-economic backgrounds and with minimal formal education are more likely to trust misleading information and be less able to critically evaluate it.

Another challenge HIV-positive people face is finding ICT resources that provide them with the particular information they need. As Horvath et al (2010) suggest, many HIV websites might be overwhelming for newly diagnosed people, which is a particular concern as these individuals are also likely to be one of the primary users of online support groups (Mo & Coulson, 2010). Furthermore different groups have different needs, such as women (Walsh, Horvath, Fisher, & Courtenay-Quirk, 2012), trans* people (Herbst et al., 2008), and, for the purposes of the current paper, gay men and other MSM. As Horvath et al (2010) suggest, the information provided on websites needs to reflect differing demographics and situational diagnoses, which may help HIV-positive people manage their disease more effectively. These challenges have design implications that impact on the functionality of ICT resources (Courtenay-Quirk et al., 2010).

Enhancing the Capabilities of HIV-positive Gay Men and Other MSM in SE-Asia

As recent authors (Courtenay-Quirk et al., 2010; Horvath, Wilkerson, McFarlane, & Courtenay-Quirk, 2012; Scanlon & Vreeman, 2013) have advocated, including HIV-people in the design and development of community development interventions is crucial. This work is based around the guiding principle ‘Greater involvement of people living with HIV/AIDS’ (GIPA) which aims to ensure that HIV-positive people are recognised for their expertise of living with HIV and are consulted at every stage of the process of developing the ICT resource (International HIV/AIDS Alliance & Global Network of People Living with HIV, 2011).

To develop an ICT resource that will enhance the quality of life for HIV-positive gay men and other MSM, B-Change Foundation sought to initially assess the needs of this population. Understanding the needs of individuals, and how it will enhance their quality of life is crucial to doing development (Sen, 1999). We draw on the Capability Approach which is focused on expanding individuals’ substantive freedoms, that is, their capabilities, and removing the “various types of unfreedoms that leave people with little choice and little opportunity of exercising their reasoned agency” (Sen, 1999, p. xii). If individuals have enhanced capabilities they are able to exercise a greater amount of choice than those with diminished capabilities. For example, the capabilities of a person who has had access to sexual health literacy programs will be far greater than a person who has had no access to such information.

ICTs, we argue, present an opportunity to enhance an individual’s capabilities while circumventing or at least buffering existing multiple stigmas and legislative barriers. Thus ICTs can be used to enhance the opportunities that individuals have available to them, which can result in individuals leading lives they have reason to value. The formative assessment undertaken at the beginning of the development of PLUS sought to understand the daily experiences of these MSM and what they need from an ICT resource to improve their capabilities and thereby improve their quality of life.

Method

An online survey was undertaken at the initial stages of the development of PLUS, from December 2012 to March 2013. The survey sought to understand the experiences of HIV-positive MSM in SE Asia, and the needs they felt could be addressed through an ICT resource. It also sought to understand how they use ICTs within their everyday lives. An online survey was determined to be the best data collection method to ensure diversity and allow access to participants across SE Asia. As has been found previously, web-based self-report questionnaires provide accessibility to a wide and broad audience (Gosling, Vazire, Srivastava, & John, 2004; Ayala et al., 2013). Using an online survey gave us access to a diverse number of participants across Asia at a low cost, which was important as the ICT resource is transnational in scope. The survey could be accessed on a computer, or through a mobile or tablet device. The use of online surveys also has the benefit of allowing volunteers to participate anonymously, ensuring their privacy.

A targeted sampling procedure was devised to reach HIV-positive MSM in SE Asia who have had a diversity of experiences living with HIV, including both those who have had contact with support and services, and those who have not. Participants were recruited through social media channels, including Facebook and Twitter. They were also recruited via email networks and contact with staff who work with HIV-positive MSM in the region who were asked to forward on the anonymous survey to their clients. As part of the recruitment strategy a poster (see Figure 1) was developed which included a blurb about the questionnaire, as well as a call to action that encouraged potential participants to either click on a hyperlink, or scan a quick response (QR) code to access the survey. The recruitment material was produced in all the languages of the survey – English, Bahasa Melayu, Bahasa Indonesian and Chinese (both simplified and traditional scripts).

Community-based organisations that support MSM living with HIV in PLUS Phase I coverage sites  (Kuala Lumpur, Jakarta, Manila and Singapore) assisted with translating the 25 closed questions in the survey. Draft translations were subsequently peer reviewed by independent third-parties from within the community prior to publication online.

Participants were eligible to participate in this program formative assessment if they self-reported as an HIV-positive male who has sex with other men. Informed consent was collected and participation in the survey was voluntary and anonymous.  Participants were given the option of getting more information about the launch of PLUS by providing an email address. Email addresses were stored securely and were not linked to their survey data.

hanckel1

Figure 1. Survey recruitment poster

Measures

The instrument collected data on demographic, social and clinical characteristics. Questions about sexual attraction and behaviour offered participants the option to provide more than one response to these questions. Information was collected about needs from an ICT-based resource by asking participants to rank 11 functions (i.e., potential uses) of an ICT peer-support service. These functions were under the following broad themes: opportunities for social and sexual relationships; access to HIV-related information and resources; information about legal and health services; and opportunities to engage in advocacy (the individual functions are listed in Table 2). Data were also sought on participants’ current use of ICTs, including information about hardware and software that they use to access the Internet, and how they engage with new ICT resources.

Sample and Analysis

During the research period, 344 people started the survey. Once the data were cleaned and ‘non-completes’ removed, there were 302 cases in total. Of these 302 there were 119 MSM who identified as being HIV-positive. This paper focuses on the experiences and needs of these HIV-positive MSM. The survey data were coded and analysed using SPSS. Summary statistics were calculated for data among HIV-positive MSM and stratified by different covariates of interest. Between-group differences among HIV-positive MSM were assessed using Wilcoxon rank-sum test for means and Fisher’s exact test for proportions; statistical significance was evaluated using a p-value cut-off of 0.05.

Results

Participants

Of the participants 117 were male and 1 identified as a female to male (FTM) transgender person . Participants ranged in age from 21 years to 68 years in age (M = 35). The majority of participants identified as Asian (n=89; 75%); few identified as Caucasian (n = 21; 18%), ‘mixed’ (n = 4; 3%), African (n =3; 3%) or Latino (n=1; 1%). Twenty-nine (24%) participants came from Malaysia, 17 (14%) came from the Philippines, 13 (11%) came from Singapore and 11 (9%) came from Taiwan. Ten (8%) came from the United States, 8 (7%) came from Indonesia and 6 (5%) were from Canada. Five or less participants (in descending order) came from Thailand, UK, HK, China, Australia, Russian Federation, Netherlands, Sri Lanka, Cambodia, Japan, India and Andorra.  Almost all participants reported being attracted to other men (99%).Many narratives have attended the rise of the read write web and social media.  Finance capitalism, the credit crunch and crash demonstrated (again) the volatility of the market and the consequences on the public sphere of private (and corporate) behaviour.  Creative industries strategies and policies attempted to inject entrepreneurialism and urban regeneration into post-manufacturing cities and nations.  The economic focus on fashion and music, sport and tourism, creates a culture where one group’s work enables another group’s leisure.  Through mobile telephony, work is displaced into leisure time.  Indeed, the confluence of consumerism and non-working time means that leisure is now traded for the more ambivalently constituted label of ‘lifestyle.’

Table 1. Profile of survey respondents

Number

%

Age

<30

>30

38

77

32%

65%

Gender

Male

FTM

117

1

98%

1%

Race

Asian

Caucasian

‘Mixed Race’

African

Latino

89

21

4

3

1

75%

18%

3%

3%

1%

Country of residence+

Malaysia

Philippines

Singapore

Taiwan

US

Indonesia

Canada

29

17

13

11

10

8

6

24%

14%

11%

9%

8%

7%

5%

+Includes >6 participants

Note: Numbers may not add to 119 and percentages may not add up to 100 for questions with missing data due to participant non-response.

Participants Experiences with HIV

On average, it has been 6.5 years since the participants were diagnosed with HIV. A significantly greater proportion of young MSM (<30), were diagnosed with HIV within the last year compared to those aged over 30 years of age (53% vs. 17%). Participants last HIV test took place within the last 3 years (M = 2.18) and their most recent consultation with a health care specialist was on average 5.36 months ago.

Eighty-seven (81%) participants indicated that they had started antiretroviral treatment (ART), while 21 (19%) participants indicated they were not on ART. Of those who had started ART, the average time since treatment initiation reported was four to five years ago (M = 4.61). Of those who were diagnosed with HIV within the last year, a significantly greater proportion had not yet started ART compared to those diagnosed over a year ago (39% vs. 12%; p = .003). A significantly greater proportion of these participants were MSM under 30 who had not started ART compared to those above 30 (33% vs. 12%; p = .02).

Following their diagnosis, many respondents reported that they experienced negative changes in the areas of sex (52%), relationships (47%) and their expectations for the future (44%). These experiences highlight domains where ICT resources can be targeted to better address the quality of life of newly diagnosed MSM. Some participants indicated a negative change in employment (31%), education (25%), friends (22%), family (17%) and religion (10%). A number of participants reported a positive change with regard to friendships (31%) and family (32%) relationships.

Accessing HIV-related Information and Support

Information related to HIV was obtained from a variety of sources. Participants indicated that they accessed HIV information from the Internet (71%), doctors (62%), support groups (48%), and friends (30%). In addition, 93% of participants reported other sources for HIV information including health professionals other than doctors, such as counsellors and nurses. They also indicated obtaining information from print media, through books, brochures and magazines, and through HIV-campaign related resources.

As previous studies (Chenard, 2007) have indicated, being able to draw on the support of friends and others living with HIV is important for social connections, belonging and resource sharing. However for the MSM in this assessment, a significantly greater proportion of those diagnosed with HIV within the past year reported not having any friends who were HIV-positive compared to those diagnosed over a year ago (16% vs. 3%; p = .023). This is also particularly true for MSM under 30, of whom a significantly greater proportion reported not having any HIV-positive friends, compared to older MSM (14% vs. 3%; p = .04).

HIV-Positive MSMs Technology Use

Respondent’s use of technologies to access the Internet for private use were varied. They were more likely to use laptops (61%) and smartphones (49%), rather than desktop computers (33%) for accessing the Internet. The respondents were most likely to use computers with Windows-based operating systems (OS) (65%) followed by a Mac-based OS (31%), Google OS (13%) or Linux OS (1%). Respondents who use smartphones were most likely to use either an iPhone or Android-based phone (45% vs. 31%). Fewer participants use a Blackberry (RIM) (13%), Nokia (7%) or Windows mobile phone (2%). Four percent were unsure of the smartphone OS they use and 2% indicated ‘other.’

More than half of the participants (58%) indicated that they are likely to wait to hear about new technologies prior to incorporating them into their everyday lives. Of these respondents 23% waited for advice from those close to them prior to adopting new ICTs. In contrast 38% of the sample indicated that they actively sought out new ICTs while 4% of the respondents indicated a frustration with using technology.

Preferred functions of a Peer-Support ICT Resource

For HIV-positive MSM the most important aspect of an HIV peer support website or app are opportunities to connect with similar others to share their experiences of living with HIV. Among the participants, 43% ranked this item as number 1 and 79% highly-ranked (ranked it in the top 5) this feature.

Table 2. Preferred functions of an ICT resource for HIV-positive gay men and other MSM by rank

% who highly ranked the functionality (top 5) % that ranked this functionality as number 1
Sharing experiences with other HIV-positive MSM 79% 43%
Opportunity to find health services in local areas 78% 9%
Ask questions about medication 75% 8%
Learn about how others deal with emotional issues 69% 7%
Opportunity to find Legal/Human Rights services in local areas 66% 10%
Meet others for friendships 34% 6%
Ask questions about sex 29% 4%
Opportunity to feedback about Health services in local areas 22% 2%
Documenting examples of discrimination 18% 5%
Meet others for relationships 18% 5%
Meet others for sex 13% 3%

Note: The percentages are rounded to whole numbers

The participants indicated that they wanted to connect with other HIV-positive MSM to share information about medication (75% highly ranked this function) and share strategies to deal with the emotional issues of living with HIV (69% highly ranked this feature). Furthermore, being able to share strategies related to emotional issues was important for a significantly greater proportion of MSM who were diagnosed with HIV within the past year, compared to those diagnosed over a year ago (84% vs. 62%, respectively).

Though the opportunity to share their experiences of living with HIV is important, of less interest to participants was having an online space to meet others for sexual encounters or for relationships (only 13% and 18% highly-ranked these features, respectively).

The HIV-positive MSM in this assessment also indicated that having access to information about local resources was important. They indicated that being connected to local health resources (78%) and legal and human rights services (66%) are important functions of an ICT resource. Few participants though saw a need for using the space as a feedback mechanism where they could rate these local health and legal services (22% highly-ranked this function). Noteworthy also is that few participants considered being able to report cases of discrimination and stigma as important; only 18% of respondents highly ranked this function.

Discussion

Taken together this formative assessment indicates that HIV-positive MSM in SE Asia seek opportunities to connect with similar peers for emotional support and belonging, and to discuss their experiences of living with HIV. Those who had been diagnosed within the last year were more likely to want to be able to share strategies related to the emotional issues of living with HIV. This finding corresponds to previous research (Horvath et al., 2012; Walsh et al., 2012) that found that socialisation and emotional support are important for people living with HIV, particularly for those individuals in their first year of diagnosis as they transition into a life living with HIV. This assessment also indicates that HIV-positive MSM under 30 and those diagnosed within the first year were least likely to know others who are living with HIV. This has implications for the types of support and (sub)cultural knowledge they have access to. Moreover, our data suggest that HIV-positive MSM under 30 and MSM recently diagnosed with HIV may be more isolated, and thus might benefit more greatly from ICTs that can mitigate their isolation.

HIV-positive MSM utilise both the Internet and offline resources to enhance their knowledge of HIV. There is an indication that what is missing from these resources are opportunities to connect with similar others whom they can share coping strategies and knowledge to increase their own HIV-related expertise. These men specifically seek information related to medication and the opportunity to share strategies for handling emotional issues related to living with HIV. In doing so they seek opportunities to enhance their own expertise of HIV, and subsequently improve their quality of life. This sharing of resources and information with similar others is sharing of subcultural knowledge; that is, these MSM seek opportunities to further enhance their knowledge and access to information about living with HIV from their peers, i.e., gay men and other MSM living with HIV.

This peer-to-peer engagement lies at the heart of enhancing social capital. The access to networks of HIV-positive MSM that online spaces afford, and the resulting subcultural knowledge is important for these men. Interestingly these HIV-positive gay men and other MSM reported less interest in an ICT-resource that connects them to opportunities for romantic relationships or sexual encounters. One possible explanation for this is that providing a space to share their emotional experiences and share resources is a more pressing priority. In addition, online spaces, such as Grindr, Jack’d, PlanetRomeo and Manhunt exist elsewhere that may fulfill the sexual and intimacy needs of these men. Our findings are similar to Courtenay-Quirk et al’s (2010) study with persons recently diagnosed with HIV in the US, where participants rated meeting others for dates or sex partners as less important than being able to socially connect with others for support.

HIV-positive gay men and other MSM are also interested in knowing more about local health care, as well as legal and human rights services. This information is crucial as many SE Asian MSM reside in areas of stigmatisation and legislation marginalisation (Csete & Dube, 2010). The discrimination encountered can result in delayed access to services (Kinsler et al., 2007). Knowing about accessible services that meet their needs are important for these MSM. Furthermore, the prospect of having a directory of safe(r) services allows for HIV-positive MSM to handle concerns about disclosure and potentially stigmatising reactions from homonegative professionals.

While identifying these services is important for these MSM, less important is being able to assess and report on their experiences of using these services. We believe that the importance of being able to assess and report on these services may change over time once these men have actually used these services and had varying experiences with them. A greater understanding of minimum standards of HIV care and support is also likely to trigger a greater interest in assessing and providing feedback on these services.

New ICTs provide opportunities for forms of advocacy and mobilization, and opportunities to document cases of discrimination. Interestingly, however, few of the men in our survey reported an interest in ICT resources that allow them to report cases of discrimination and stigma. It may be that participants believed that HIV-related discrimination was not a reportable offence or a human rights violation. Question wording may have also shaped responses. The item asked participants if they thought it was important to be able to ‘document examples of discrimination and stigma.’ Participants may have reservations about whether documenting this information actually works or if it puts them at risk for further stigma and discrimination. How these MSM might be empowered through ICT resources to document and report lived experiences of stigma, a critical practice in HIV and LGBT advocacy, remains an area for future investigation.

Taken together these needs represent capabilities that participants do not have access to, or do not believe current services adequately fulfill. A peer-support website or app has the potential to fulfill these capability deprivations. By being able to provide HIV-related information and connection to similar others, an ICT resource can address the information deficiencies that these men experience because of the multiple stigma they face as gay men and MSM living with HIV. In doing so, ICTs can help improve their quality of life by breaking down barriers due to stigma and connecting them with resources and information important to their needs.

Limitations

Like all formative studies, the current assessment has several limitations. One is that the conclusions drawn here are from a small non-representative sample of predominantly HIV-positive MSM from SE Asia. Secondly, though we presented data on technology use, these behaviours are likely to change over time as new hardware and software emerge. In addition, our data are based solely on self-reports, rather than direct observations of technology use. Finally, even though we sought to get a diverse sample of participants and translated the survey into several languages, the survey could not reach HIV-positive gay men with literacy constraints, who do not readily use or access ICTs, and those with technological limitations during the time of data collection.

Conclusion

There is a need in SE Asia to connect HIV-positive MSM to safe, supportive settings where they can accrue the (sub)cultural capital and knowledge they need to be able to enhance their capabilities and thereby improve their quality of life. This is particularly the case for MSM under 30 and those who have been recently diagnosed with HIV who may not have the connections with others living with HIV.

HIV-positive MSM are actively engaged in using new technologies. The particularly large number of mobile phone users is unsurprising given the increasing uptake of mobile phones in Asia (International Telecommunications Union, 2013). This development provides increasing opportunities for the deployment of ICT resources that engage HIV-positive MSM in SE Asia. Through a greater understanding about how HIV-positive MSM adopt and use new technologies, as well as the needs that ICTs might be able to fulfill, we can ensure that the limited resources available are used effectively for developing and designing effective ICT resources for their needs.

This assessment has been an important initial stage in engaging HIV-positive MSM in the design of PLUS, an ICT resource being developed by B-Change Foundation. These findings and the ongoing testing of the service with HIV-positive MSM will inform the creation of a resource that is responsive to the needs and capability deficits experienced by these MSM in SE Asia, which has the potential to be scaled up across other geographic regions.

Our formative assessment indicates that HIV-positive MSM are looking for information, emotional support, and resources from similar others to learn more about living with HIV. These needs, or capability deficits, can be addressed and enhanced through strategically designed ICT resources that can circumvent marginalising stigmas. In doing so ICT resources afford the opportunity for enhancing the participants’ lives and overall quality of life.

Funding Source

A grant to kickstart PLUS was provided to B-Change Foundation from Satu Dunia Indonesia with financial support from the Global Fund to Fight AIDS, Tuberculosis and Malaria as part of the ISEAN-Hivos Program. B-Change Foundation receives direct support from the B-Change social enterprise group for the launch and maintenance of PLUS and will continue to seek other partners to help consolidate and expand the range of functions that the web-app offers.

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Biographical statements

Benjamin Hanckel is a PhD candidate at the University of Technology, Sydney and also the Monitoring and Evaluation consultant for B-Change Foundation. His work explores the role of technology in development programs, with a particular focus on the Asia-Pacific region.

Laurindo Garcia is a civil society, diversity and inclusion advocate based between the Philippines and Singapore, who is often called to give a perspective of people living with  or affected by HIV in the Asia-Pacific region. He is coordinator for two regional community networks promoting health for sexual and gender minorities. In 2011 he founded a regional social enterprise group called B-Change that promotes social change through technology.

Glenn-Milo Santos, PhD, MPH is a Research Scientist for the Center for Public Health Research in the San Francisco Department of Public Health and an Assistant Professor in the Department of Community Health Systems at the University of California, San Francisco.

Eric Julian Manalastas is an assistant professor at the Department of Psychology, University of the Philippines since 2007 where he teaches undergraduate courses in social psychology, human sexuality, and LGBT psychology. He is founding coordinator of the LGBT Psychology Special Interest Group of the Psychological Association of the Philippines.


Tara Brabazon

Published Online: July 5, 2014
Full Text: HTML, PDF (437 KB)

Abstract

Social media sites – like Flickr, Facebook, YouTube, FourSquare and Twitter – summon a tapestry of friendship, humour and community between digitally literate citizens around the world.  But the role and value of these platforms and portals for education, teaching and learning is neither self-evident nor obvious.  Therefore, this article returns to a key early text in the sociology of education:  Paul Willis’s Learning to Labour.   Willis addressed the injustices within and beyond school.  He probed how teaching practices and the ‘resistive’ behaviours of young men ensured that they were prevented from – and indeed prevent themselves – from gaining social mobility.  Everyday practices such as smoking, drinking, truancy and swearing undermined their capacity to improve economic and social status.  It is appropriate to return to Willis’s argument and explore new strategies for avoidance, resistance and denial in the digital cultures of education.  I track the movement from learning to labour to learning to leisure.

Keywords: Social media, Facebook, Paul Willis, leisure, literacy, resistance

Education has always inspired fear among those who want to keep the existing distributions of power and wealth as they are.

-Howard Zinn (2005, p. 87)

Many narratives have attended the rise of the read write web and social media.  Finance capitalism, the credit crunch and crash demonstrated (again) the volatility of the market and the consequences on the public sphere of private (and corporate) behaviour.  Creative industries strategies and policies attempted to inject entrepreneurialism and urban regeneration into post-manufacturing cities and nations.  The economic focus on fashion and music, sport and tourism, creates a culture where one group’s work enables another group’s leisure.  Through mobile telephony, work is displaced into leisure time.  Indeed, the confluence of consumerism and non-working time means that leisure is now traded for the more ambivalently constituted label of ‘lifestyle.’

This article explores what happens when social media conflate with educational media. Social media sites – like Flickr, Facebook, YouTube, FourSquare and Twitter – summon a tapestry of friendship, humour and community between digitally literate citizens around the world.  But the role and value of these platforms and portals for education, teaching and learning is neither self-evident nor obvious.  This article attempts to create a moment of consciousness in platform selection.  Simply because content can be digitally migrated between platforms does not mean that it should be.  I wished to log the importance of Gunther Kress’s research in many of the argument made, particularly his conceptualisation of multimodality.  Kress (2010, p. xiii) outlined the use of multimodality as, it “can tell us what modes are used:  it cannot tell us about this different style; it has no means to tell us what the difference might mean.”  The aim of this article is to start to configure how these different modes and styles can be used in a way that enables learning and information literacy.  Therefore, in this article I return to a key early text in the sociology of education:  Paul Willis’s Learning to Labour.   Willis addressed the injustices within and beyond school.  He probed how teaching practices and the ‘resistive’ behaviours of young men ensured that they were prevented from – and indeed prevent themselves – from gaining social mobility.  Everyday practices such as smoking, drinking, truancy and swearing undermined their capacity to improve economic and social status.  It is appropriate to return to Willis’s argument and explore new strategies for avoidance, resistance and denial.  I track the movement from learning to labour to learning to leisure.

Facebook matters to this article, as it matters to schools and universities.  By 2011, it was reported that one in every eight minutes spent online is on Facebook.  Students could be listening to an online lecture or reading a refereed article through Google Scholar.  Instead, they are choosing to visit Facebook, which is replacing both Google and Yahoo in total time spent online (Kagan, 2011). Being on Facebook has become the default behaviour for millions of citizens around world and a default sign in option for myriad websites.  Facebook is not the problem, but assuming that anything is intrinsically educational on the site is a concern.  It is possible to use it in ways that are beneficial for education.  However social media are not intrinsically or inevitably educational media.  The consequences of that premise are my focus.

How working class kids still get working class jobs

The difficult thing to explain about how middle class kids get middle class jobs is why others let them.  The difficult thing to explain about how working class kids get working class jobs is why they let themselves.

-Paul Willis (1997, p. 1)

Willis’s argument is seductive.  Deploying ethnographic research methods, he entered the culture of young men at school and demonstrated how their ‘resistance’ to teachers and education was effective in the short term, but blocked their chances for learning and social mobility.  Specifically, Willis asked how leisure behaviours like smoking, truanting and swearing undermined learning possibilities.  To digitally migrate his argument, students are now texting, updating and commenting on social networking sites.  Instead of swearing and back-chatting the teacher, they are silent and chatting back to their friends on mobile phones in classrooms.  Digital leisure, like analogue leisure, obstructs structured learning.  In his original study, Willis (1997, p. 2) explored how ‘resistance’ to school ensures that young working class men are ‘prepared’ (through a lack of other options) to enter manual work.

In a post-industrial society, the Willis 2.0 question is how education is used to prepare students for underemployment and a capping of expectations.  In other words, how do social media create spaces for resistance for students that – by wasting time commenting and updating on issues that do not assist their learning – block their chance and opportunity to learn?  To give readers one example from my classroom, I rarely have problems with mobile phones in lectures and seminars.  I often make a joke about the first ring or beep in the lecture or seminar, mentioning the owner’s necessity to take the call to complete a drug deal.  The laughter and touch of embarrassment is enough to stop the phones during formal teaching hours.  However there is one student where I failed to curb this inopportune connectivity during formal learning.  I just managed – by some serious nagging and pushing – to help Lily pass my module in the first semester of her first year.  She failed her two other courses.  This threat of expulsion may seem to provide sufficient motivation to concentrate in the second semester.  Unfortunately not.  By the end of the second semester, Lily was even texting in my class.  Her first assignment showed she had no real idea about the question or the course and had conducted no reading.  She failed.  While the distraction of the mobile phone was not the cause of her failure, it was clear she had lost the ability to differentiate between education and leisure, important and trivial, concentration and distraction.  In this case, social networking during university teaching and learning sessions blocked Lily from completing her degree.  Marc Prensky, when considering such failures, justified them as a product of intelligence and wisdom, rather than a lack of motivation and concentration.

More and more young people are now deeply and permanently technologically enhanced, connected to their peers and the world in ways no generation has ever been before.  Streams of information come at them 24/7 … Do such kids need school?  More and more of them (almost a third nationally and half in the cities) think not, and drop out (Prensky 2010, p. 1).

Lily did not drop out.  She was formally excluded for failure.  Her connectivity and lack of concentration, study and reading denied her a degree.  This is not ‘technologically enhanced,’ but intellectually deluded.

While social media and connectivity can provide distraction, there are more serious applications of the read write web in undermining the credibility granted to both education and teachers.  Just as Willis’s lads abused teachers behind their backs, Facebook enables this practice to continue, and with a much wider audience, with groups titled ‘Worst Teacher Ever.’5 Often, these groups are given the Facebook category of ‘Just for Fun.’  The blogosphere is also used to collectivise and vent rage about the “Worst Professor” (for example: “Worst professor” 2010).  A more organised, ordered and searchable version of this opinionated and misguided ranking system is “Rate my professors.”6 In this case, anonymous students rank and judge their teachers.  The criteria by which they judge academics raise questions, even from other students.  Steiner (2010) probed the value of “Rate my professor.”

In theory, it does serve a purpose; it helps uninformed students find the best professors and avoid the worst … What does it say about the student population if we pick and choose professors by relying on anonymous reviews that often favor ‘easy’ courses? And how reliable can these reviews actually be? … Furthermore, the reviews are limited to a few dozen words and categories including ‘easiness,’ whether attendance is required, and, for Rate My Professors, ‘attractiveness,’ all of which doesn’t afford the opportunity for a very complete evaluation.

The systemic consequences of such a rating strategy were revealed by a Kaplan survey (Schaffer & Wong, 2010).  The data revealed that such review systems penalise the harder and more challenging markers, with student reviews being the basis for course selection.  Kaplan even argues that such socially networked course selection has created grade inflation, with large groups of students using Rate My Professor and choosing a course on the basis of easy marking.  The confluence of ‘popularity’ of a staff member and ‘easy’ marking is damaging to accountability and rigour in higher education.  When mediated and circulated through Facebook, popularity and easiness are then confused with quality learning.

Paul Willis’s research asks deep questions about ‘agency’ and ‘choice’ in formal educational environments.  But Willis’s work is also a reminder that education is difficult.  To succeed requires reading, focus, care and respect.  It is based on foundational recognition that teachers know more than students.  Obviously clichés of student-centred learning and digital natives attempt to mask this truth.  I am not suggesting that students do not arrive in a classroom with valuable experiences and expertise.  However I am arguing that teachers know more than students.  That is why they are teachers.  If they do not, then they should be removed from the classroom.  Students being ‘Born Digital’ is not the point (Palfrey & Gasser, 2008).  In making this statement, there is an attendant realisation that time is the most precious resource in not only learning, but life.  The imperative is to use the time well as the moment of enrolment in a formal learning environment is short.  Yet social media can transform crowd sourced information about quality teaching into crowd bullying of staff (and other students).

Willis provides the arguments to explain this ridiculing of staff.  He demonstrated that such ‘resistance’ is trivial, flippant and carnivalesque.

This opposition is expressed mainly as a style.  It is lived out in countless small ways which are special to the school institution, instantly recognized by the teachers, and an almost ritualistic part of the daily fabric of life for the kids (1997, p.12).

Willis showed that the “caged resentment” of the lads always stopped “just short of outright confrontation” (1997, pp. 12-13)  The online environment provides an even safer and often anonymous environment to express rage, hatred and blame.  Outright confrontation is blocked by the screen.  Such sites raise key question about learning:  who is responsible for success and failure?  If a student does not attend a class or complete the reading and therefore fails the assessment, then should the measures of achievement be lowered and changed, or is personal accountability to be activated?  Willis was clear:  truancy was “a very imprecise – even meaningless – measure of rejection of school” (1997, p. 27).  In the online university ratings, such as Rate My Professor, the desire to find an easy course where attendance is not mandatory and a high grade can still be attained, is rewarded with a high score.

By students not participating in lectures, tutorials and seminars, they may receive an adequate grade.  But their learning – let alone the metalearning about intellectual discipline and rigour – is not achieved.  Willis discovered that particular behaviours constructed a “space won from school” (1997, p. 29). Similarly, a space is ‘won’ from university through social media resistance.  But working class children continue to gain working class jobs.  Middle class web-enabled students continue to suffer degree inflation, underemployment and disappointment in attaining their aspirations.  Formal learning is woven by a truth:  the harder the student works, the more they learn.  If they mobilise academic shortcuts, they harm themselves.

There is a human face to educational success and failure.  The widening participation agenda in further and higher education is both socially just and economically important.  However the legacy of undereducated earlier generations still has an effect.  As Fran Abrams (2010, p. 45) realised, “time after time, studies had shown the pupils whose parents had the most education did best at school.” Injustice is perpetuated through the continuance of educational inequality.  There has been insufficient intervention in literacy, reading, writing, aspiration and motivation to overcome earlier injustice.  The maxim that propelled my research in The University of Google was that students who are the first generation in their family to enrol in higher education require more attention from teachers, not less (Brabazon 2008a).  They require more assistance, scaffolded assessment and an overt discussion of the expectations of university.  Geoff Pugh, Gwen Coates and Nick Adnett (2005, p. 33) argued that “students from under-represented groups may require more extensive support or more radical changes in teaching and learning strategies if they are to approach completion rate norms … a priority should be to find ways of ensuring more students succeed in completing their course and qualification rather than intensifying the marketing effort to expand recruitment.”7 Yet the widening participation agenda has been concurrent with the proliferation of online learning and – even more seriously – the managerialisation of our institutions.  This means that the group that requires the most assistance has enrolled at the point that the least direct (face-to-face) teaching is actually available.  Certainly Skype, academia.edu, Facebook, Twitter and FourSquare are useful when embedded into curriculum, but they are supplementary processes rather than learning outcomes in themselves.  The new managerial tier in universities has used online learning as an excuse to reduce the number of academics, reduce teaching time, reduce support structures and reduce the corporeal, real time relationships formed between staff and students.  There are fine uses of the social web in information literacy, media literacy and creating extra forms of support for students.  But the medium is not the message.  Social media are not intrinsically or inevitably learning media.  Form is not content.

The more complex question to consider is the role of social media in either addressing or reinforcing this demarcation of aspiration and achievement.  Applying Willis’s influential study to an education system framed by the read write web requires that teachers ask if social media are assisting students in their learning or merely offering distractions or transitory and ineffectual ‘resistance.’  The internet and web provides access to an extraordinary array of information that, when matched with information literacy, is searchable and provides profound benefits and opportunities.  Social media increase the connectivity, community and communication potential of the web.  When integrated with care into a teaching and learning portfolio, it enables an immediacy of feedback, individualised attention and mobility of information and support (see: Shim et al. 2007).  To provide one example, Skype assists students in ‘meeting’ the authors, researchers and academics they are reading, providing a context around their learning beyond a single institution or classroom (Terry, 2009).

Willis asked how middle class kids continue to attain middle class jobs.  One provocative answer is that ‘we’ let them, through a neglect of all the strategies and imperatives that are possible to activate through education to address social and economic inequality and oppression.  To update his argument, some of these strategies to intervene in class-based discrimination and inequality involve monitoring and managing social media (Giampapa, 2010). Without intervention through curriculum and literacy programmes, assumptions about ‘young people’ (and ‘old people’) will ensure that those currently in power remain in power.  With thought and care, media configured for leisure can be deployed in learning.  But it will be used in a different way.

Willis’s arguments agitate with great resilience in our present.  As Stanley Aronowitz (2004, p. ix) argued, Willis’s lads were “exercising ‘agency’ by choosing to ‘fail.’”  The consequences of that failure are now much more serious, with “the factory jobs that were still available in the early 1970s … now gone” (2004, p. x).  Software and hardware have increased the productivity and efficiency of work, but reduced the size of the labour force.  Education is implicated in such changes, offering the pretense of status and mobility.

The new working-class jobs – coded as forms of ‘professional’ labor – bring with them neither good wages and benefits, nor do they reproduce working-class culture.  As the first generation to have earned a post-secondary credential, many working-class kids have been inducted into the value systems and expectations of the salaried middle class, but without acquiring the accoutrements (2004, p. xi).

For the ‘failing’ students recorded in Willis’s research, unskilled work was still available.  Academic success was not the only path to economic stability.  Such jobs and options have now reduced.  The phrase ‘labour saving device’ describes labour reducing devices.

Returning to Learning to Labour twenty five years after its publication, Willis (2004, pp. 182-183) like Aronowitz confirmed the changes that had taken place.

The new high-tech jobs and the higher level training and educational programs designed to fill them are irrelevant to most of the displaced and to be displaced manual industrial workers … We are seeing in the current ‘postindustrial revolution’ a shake out of especially male industrial labor on a scale similar to that of the shake out of agricultural labor in the first industrial revolution.

Many jobs now require not only the completion of high school, but a university degree.  This ‘reality’ designates not only degree inflation, but labour surplus.  With plenty of workers prepared to move to accept a job, work split and reduced shifts, take mobile telephone calls in their leisure time, answer emails and be prepared to be called into work at short notice, higher levels of education become one more strategy to manage – or manipulate – labour surplus.  Technology has not caused such a change.  But the industrial revolution ensured that a smaller workforce could become more efficient and productive through the aid of machines.  The proliferation of the internet has enabled information, ideas and money to travel through national borders, increasing efficiency and reducing the need for local workforces.  Off-shore outsourcing enables a range of tasks to be completed by the worker drawing the lowest wages anywhere in the world.

The ideological confusion between technological change, efficiency and progress has punctuated the history of many nations in the last two hundred years.  The idea that technological change may reduce efficiency and productivity seems not only counterintuitive, but anti-historical.  Yet this hypothesis is worth consideration.  Does there reach a point where over-automating spelling checking and information searching creates a deskilled student as much as Henry Ford’s assembly line created the deskilled worker? (Lee, 2010).8 If software and hardware are proxies for developing skills in thinking, reading, writing, searching and learning, then does this loss of literacies really matter?

If students do not learn to spell because a spelling checker is housed in a word processor, do not learn grammatical rules because errors are corrected in a word processor and do not have to remember facts because they can look them up at speed via Google, then is this progress?  Is there value in holding these analogue skills in reading, writing and remembering?  Such questions are made more serious because of the ageism that accompanies technological change.  Indeed, it is a form of reverse ageism, suggesting that a particular group of young people have intrinsic skills and abilities, thereby not requiring the benefits and commitment of formal education.  The extreme end of Paul Willis’s argument – demonstrating how young people disenfranchise themselves from education – has relocated into the debates encircling the phrase ‘digital natives.’

Digital natives and analogue underemployment

There is a reason why Paul Willis is the analytical spine of this article.  It is important to log that students in the analogue age complained, challenged teachers and enacted behaviour that was rarely in their best academic interests.  But the imperative of Paul Willis’s research was that such ‘resistance’ and ‘rebellion’ was pointless.  Working class children continued to attain working class jobs, like their parents.  Yet age and generation were not the key variables in his study.  Class was much more significant.  Therefore, it is inaccurate to over-emphasise a particular age or generation as ‘inventing’ resistance to teachers and institutions of learning.  When aligning age and technology into a simple package, the reification of research variables creates generalisations and inaccuracies.

The journalistic narrative moves through a familiar pattern.  A generation started to use social networking sites.  After three years of accessing Facebook, the human brain transformed into a comatosed, bored, listless and illiterate mash of meat.  Supposedly – as this zombie movie progresses – students are now incapable of grasping complex ideas because they are dragged through life by white earphones.  Mark Bauerlein (2009) discovered “the dumbest generation,” formulated through a lack of analogue reading and literacy skills.   Yet his argument is more subtle than such a book title suggests.  He acknowledges the great potential of the online environment for learning.

Never have opportunities for education, learning, political action, and cultural activity been greater.  All the ingredients for making an informed and intelligent citizen are in place (2009, p. 10).

Yet from this potential, Bauerlein locates problems in, with and through social media that particularly inhibits young people.

It isn’t enough to say that these young people are uninterested in world realities.  They are actively cut off from them.  Or a better way to put it is to say that they are encased in more immediate realities that shut out conditions beyond – friends, work, clothes, cars, pop music, sitcoms, Facebook (2009, p. 13).

This is a more subtle argument, about socialisation rather than brain transformation.  Conversely, there is an alternative discourse where, instead of these brain changers being the worst students in the history of education, they are actually the best.  Don Trescott and Marc Prensky lead the way in such an interpretation.  Seemingly forgotten is that new media become old media (or the less ageist description, mature media) very quickly.  Skills with software and hardware are easy to attain.  Understanding how to use these skills in context and evaluate their results is a more complex process.  However once more, as if tracing ageism from people and onto technology, new is better.  Old is a problem.

Such talk about youth and media is not new.  Assumptions are always made about youth, particularly when the people making the assumptions are not young (Cohen 1972).  From the 1960s, the market economy required the invention of new target markets to enlarge and differentiate consumption. The ‘generation gap’ was invented to express a loss of faith in traditional authority structures.  Clothes, rock music and long hair were connoted as not only different or radical (Jones 1990), but the building blocks of revolution (Hall & Jefferson 1976).  Since the 1960s, this sweeping statement of difference on the basis of age has had many consequences.  Firstly, and perhaps most significantly, the focus on age has meant that other social variables – particularly race, class (Savage 2000), gender (McRobbie & Nava 1984; McRobbie 1991), and religion – have been under-discussed. Secondly, alongside this simplification of identity is an absence of history.  A single cultural formation – music, fashion, hair, the web – is rendered much larger and more significant than it actually is.  Thirdly, the writers extolling youthful difference invariably read young people as a force of change, defiance, crisis and threat (Pearson 1983).  This revolution through youth continues until the moment they enter adulthood (Rimmer 1985). Then the next group of 13-19 year olds – Generation X (Redhead 1990; 1997), Generation Y, the Nintendo Generation and the Google Generation – is scanned for their threat, promise, challenge and transformation.

Ideologies of youth prevent and often block actual research into behaviour, history and context, enacting profound damage to schools, universities and libraries9 and flattening conceptualisations of literacy.  This simplification through generation has existed since the 1960s with the mods and their amphetamines and scooters, the skinheads with their boots, violence and racism and the punks with safety pins, slashed clothes and mohawks (Savage 1991). Now that music and fashion are no longer battlegrounds between generations (Hebdige 1979), the talk of radical change and threat has moved to technology.

Instead of mods, skins, rockers, punks and goths, the new group of threat and opportunity has been labelled as Digital Natives.  This phrase was first used in 2001 by Marc Prensky.  A management consultant, he used the term to demonstrate that, “today’s students think and process information fundamentally differently from their predecessors” (Prensky 2001).  Once more the young ones are restless and the older generation does not understand them.  But true to the pattern, Prensky has:

  1. diagnosed a moment of revolutionary change,
  2. invented a social crisis and failure in education resulting from it and
  3. transformed himself into the consultant to fix it.

Actually, generation is too blunt a sociological instrument to understand social, economic and political change.  It always has been.  It is far too vague a description to understand an age group and how ‘they’ deploy ‘technology.’  But in his affirmation of modernity, it is not surprising that Prensky deploys reified, positivist science:  “it is very likely that our students’ brains have physically changed – and are different from ours – as a result of how they grew up” (Prensky 2001).  Besides simplifying how ‘a generation’ engages with information, he has also hypothesised a physiological transformation of the human brain.  It is significant to note that he has confused anatomy and socialization to make this case.

His argument becomes more damning when describing those ‘older people’ who doubt the scale of this change (and his hypothesis and rationale) as Digital Immigrants.  Appropriately in a post-multicultural era, being an immigrant is a problem because they keep a “foot in the past” (Prensky 2001). This group is a technological inhibitor because they use the internet after other media when searching for information and supposedly print out emails.  No ethnography or participant observation data is cited to verify these claims.

Forgotten by Prensky is that the platforms, data and information being processed at multi-tasking speed by the ‘natives’ were actually invented by ‘immigrants’ like Bill Gates, Serge Brin and Chad Hurley.  A reality overlooked by Prensky is that ‘immigrants’ know more than ‘natives.’  In less xenophobic times, such a statement would be self evident, even at the level of analogy or metaphor.  Immigrants have lived in different ways, in at least two places and must manage the trauma of movement, translation and change.  Immigrants are flexible because they have to be.  Digital immigrants hold experience of drafting on a screen and drafting on paper, noting both are valuable and often locate different types of errors.  They know how to engage with information quickly or slowly, understanding when superficial reading and data mining will suffice and when a line by line, page by page, chapter by chapter deep involvement with an intricate text is required.  But statements about continuity, stability and considered reflection do not sell books, win grants or fuel consultancies.  Prensky therefore must preach crisis and endless change:

If Digital Immigrant educators really want to reach Digital Natives – i.e. all their students – they will have to change.  It’s high time for them to stop their grousing and, as the Nike motto of the Digital Native generation says, ‘Just do it!’ (Prensky 2001).

Marc Prensky started much of this brain-changing discourse, constructing a generational crisis where none existed.  Significantly too – and for those committed to widening participation and lifelong learning – an obvious corrective must be made. “All our students” are not unified by age or any other social variable.  Students are a diverse group, socially, economically and culturally.  While Prensky saw this generational revolution as an opportunity to develop his consultancy business, other commentators summoned fully fledged moral panics.

The Daily Mail, a Conservative British newspaper, pounces on particular topics to promulgate fear: young people, technological change or declining literacy.  When these three panics combine, the resultant article is a horror movie that makes Michael Jackson’s video for ‘Thriller’ look like an advertisement for L’Oreal anti-ageing products.  The front page of the Daily Mail on February 24, 2009 warned that “Social Websites ‘harm a child’s brain’” (Derbershire 2009).  That quotation came from “neuroscientist Susan Greenfield” (Derbershire 2009).  While she is acknowledged as “an eminent scientist” in this matter, she has not displayed her expertise in research methods.  The basis for her arguments (buried on page six of the paper) lacked triangulation of data.  The paper reported that Baroness Greenfield “told the House of Lords that a teacher of 30 years had told her she had noticed a sharp decline in the ability of her pupils to understand others.  ‘It is hard to see how living this way on a daily basis will not result in brains, or rather minds, different from those of previous generations’” (Derbershire 2009).  The combination of ‘Chinese-whisper’ referencing (informing parliamentarians what a teacher had told her) and a misinterpretation of the words from her informant resulted in an odd lurch between personal opinion, scientific observation and the inferences made from the views of others.  Apparently the teacher reported a decline in ‘understanding’ others.  In other words, there has been a shift in communication skills.  How oral and aural literacies align or disconnect from digital literacies is an intricate and complicated topic.  Multiliteracy theorists have taken such a disengagement or convergence as a primary research focus.  None of this material is cited by the Baroness or the Daily Mail.

Such an absence is no surprise.  Historically, the Daily Mail has shown a propensity to endorse science above the humanities and neuroscience over media studies.  Therefore, to verify the statements cited from the Baroness, I returned to the Lords Hansard entry for the day, assuming she had been mis-quoted.  I found that Greenfield’s arguments became even more disturbing than those reported in the newspaper.

We do not know whether the current increase in autism is due more to increased awareness and diagnosis of autism, or whether it can—if there is a true increase—be in any way linked to an increased prevalence among people of spending time in screen relationships. Surely it is a point worth considering (HL Hansard 2009).

She also compares social networking and screen cultures to “the thrill of compulsive gambling or compulsive eating” and “being linked to similar chemical systems in the brain that may also play a part in drug addiction” (HL Hansard 2009).

This biologically determinist discourse is a mode of neo-Lombrosian thinking.  Instead of measuring the size of the cranium and offering hypotheses about intelligence, these neo-Lombrosians jump straight to the brain itself without experimentation or scientific observation to make their case.  At least Lombroso used a tape measure to provide some ‘evidence’ for his arguments.  These current brain changers offer their opinions as ‘worth considering’ with multiple caveats.  Yet the cost and consequences of their undertheorised clash of social and technological variables is unfortunate for educational policy.  When the biological bases for actions are promoted, whether this mode of argument is used to locate crimogenetic tendencies, laziness, stupidity, brilliance, intelligence or anti-social behaviour, positivism predominates.  The brain becomes the cause of behaviour.  Such an argument blocks any responsibility (or necessity) for a teacher or librarian to intervene in learning strategies.  It would not make the front page of the Daily Mail to argue that students are not any better or worse than they have ever been.

There is now a counter flow of evidence critiquing the Neo-Lombrosians.  Research probing online participation is showing data in direct opposition to the brain changers.  The Generations Online in 2009 Report from the Pew Internet and American Life Project found a declining variance between different groups’ web use.  Sydney Jones and Susannah Fox (2009) found that “larger percentages of older generations are online now than in the past, and they are doing more activities online.”  Their hypothesis from the gathered data is that “we can probably expect to see these bars [measuring age-based differences] become more level as time goes on” (Jones & Fox 2009).  While the young have dominated digital environments, this online profile is shifting.  The integration of mobile and digital platforms in daily life is building literacy in online platforms far beyond a ‘Google Generation’ or ‘Digital Natives.’

Similar results were logged in January 2008, in Jiscs ‘Information Behaviour of the researcher of the future’ (2008), better known as the Google Generation Report.  It had a short-term run in the daily press that focused on the phrase Google Generation, rather than the findings of the Report.  Behind the headlines and clichés, the outcomes of the Report were startling.  There was a profound realisation that computer literacy was masking other educational problems.  The conversational phrasing deployed in the Google Search engine did not facilitate the movement to other search engines and directories such as Google Scholar or the Directory of Open Access Journals.  Significantly, they confirmed that information literacy concerns were rarely generational but were pervasive throughout all age cohorts.

  • “There are very very few controlled studies that account for age and information seeking behaviour systematically:  as a result there is much mis-information and much speculation about how young people supposedly behave in cyberspace” (Jisc 2008, p. 14)
  • Not only is the “Google Generation” reading less, but academics more generally are reading less.  The ‘Google Generation’ is not dumbing down, ‘society’ is dumbing down.
  • The Report noted a wide tendency to skim read, particular the abstract, and to not progress further into the paper.  This tendency was not only found in ‘young people’ – but all researchers.
  • “Digital literacies and information literacies do not go hand in hand” (Jisc 2008, p. 20).

Assumptions about young people and technology have blocked considered discussion of literacy.  Instead, a low skill base facilitated through conversational phrasing in Google has decentred debate and research into information seeking skills.  The lack of research about online behaviours, particularly over the last decade, has had an impact.  Policy and funding decisions about education have been made on the basis of mis-information.

This Report confirmed that assumptions about the online environment and students will damage the researcher of the future.  Tabloid-fuelled biological determinism and ageism about computer use has injured educational policy decision making.  Certainly, social conditions impact on behaviour and learning styles.  How students occupy their leisure time influences their demeanour in the classroom and workplace.  Student aspirations, environments and literacies should be monitored and studied.  But if concentration is lacking, then it is not a sign of autism but reveals the need to develop tasks for building interpretative skills.  A lack of reading is not caused by an addiction to pleasure, satiation, gambling and drug taking.  Instead, teachers must mobilise a range of assessment options – workbooks, journals, reflective papers or creative-led exegeses – to encourage and enable the deployment of motivated research in student assignments.  We as teachers can be staunch in our interventionist strategies.  For my first year students, I state that they should not even think about submitting a paper with less than ten sources.  My pass mark starts at that point.  They grumblebum.  They complain that I am a bha-ich.  But they read:  first to receive the grades and then because they – grudgingly – start to enjoy the challenges of scholarship, writing and thinking.  Whenever the focus is on brains and not literacies, we miss opportunities for teaching, thinking and scholarship.

Talk of brain changers stops debate.  If the argument that students’ brains have changed continues, then there is nothing that can be done and no possibility for intervention or transformation.  Distraction and disconnection is not the characteristic of one generation or age group.  Bauerlein did however offer a provocative hypothesis about screen culture and the development of multiliteracies.

Visual culture improves the abstract spatialization and problem solving, but it doesn’t complement other intelligence-building activities … The relationship between screens and books isn’t benign (2009, p. 96).

Even more significantly, and aligned with Willis’s Learning to Labour, Bauerlein was concerned about the loss of time when deploying social media rather than educational media.

Every hour on MySpace, then, means an hour not practicing a musical instrument or learning a foreign language or watching C-SPAN.  Every cell-phone call interrupts a chapter of Harry Potter or a look at the local paper.  These are mind-maturing activities, and they don’t have to involve Great Books and Big Ideas.  They have only to cultivate habits of analysis and reflection, and implant knowledge of the world beyond (2009, p. xi).

These ‘choices’ of behaviour are not generational or age-specific.  But these are decisions that matter.  When an email interrupts writing, when a text message disturbs reading a complex argument, then the development of deeper and more complex ideas and interpretations is more difficult.  Therefore, the relationship between information, media, learning and literacy must be considered with care and reflection.  A balance is required between education and technology, rather than enabling the new to configure the important.  For education, teaching and learning to function, there must be much more attention on making conscious and reflexive choices about time and behaviour that are beneficial to intellectual development, rather than encouraging sloppy thinking that a particular generation are ‘digital natives’ and therefore – seemingly ‘naturally’ – understand how to use web-enabled platforms in intellectually rigorous ways.

Leisured learning?

An increasingly complex relationship – and discussion – needs to be held about the relationship between access to digital media and the literacies required to use them with rigour and efficiency.  The assumption that one particular age group holds specific gifts and abilities simply because of their birth date are not only inaccurate but inhibitory for skill development programmes (see: Mossberger et al. 2003, pp. 1-2).  Instead, more intricate studies, theories and models are required that probe the relationship between basic literacy (the encoding and decoding of text or reading and writing) with higher order information literacy.  Also, by focusing on ‘young people,’ the technology discussed is present in the home and carried on a mobile phone, rather than the workplace, school or university.

Leisure slops awkwardly into both labour and education.  There are better and more complex ways to understand online injustice and inequality.  For example, Mossberger et al. (2003) located four ‘digital divides’:  access, skills, economic opportunity and democratic participation.  Instead of activating these complex discussions, the managerialism of education is built on an incorrect premise:  that teaching and learning is economically efficient.  Online education rarely slots into a balanced budget.  Similarly underdiscussed is ‘gaming behaviour’ from normally civilised students who flame their colleagues with racist, sexist or homophobic abuse (Turan et al. 2011). It is much easier to celebrate mobile(phone) learning (Thorton & Houser 2005), or Wikipedia’s ‘history’ page for critical thinking (Rosenzweig 2005), than to actually consider – beyond a tabloidised shriek – why widening participation agendas have failed (Thomas 2001), and why there is a high drop out from first year students (Chemers et al. 2001).

The justification for this techno-educational bundle is convincing.  It is both convenient and cheap to undervalue the role of teachers and formal education in citizenship, the workplace and democracy, to suggest that very basic software and hardware are the foundation for the ‘new economy.’  Similarly, it is cheaper to affirm the value of student-centred learning and deny the expertise of teachers.  But the knowledge held by teachers and students is not equivalent.  Teachers know more.  They write and read expansively.  They write and interpret curriculum.  They set assignments.  They moderate and examine.  They study, think and translate complex ideas into the stepping stones of lesson plans.  Students can enact none of these tasks.  Two distinct forces have decentred awareness of these distinctions between teachers and students.  Progressivist and liberal politics have celebrated the value of the students’ voice in a form of mock-1960s libertarianism, building on the work of Ivan Illich (1971). Concurrently, neo-liberal forces have added the inflective of the market to the educational mix.  As Mark Pegrum confirms,

Western education has become increasingly subject to the economics of the market and the creed of neoliberalism, where the state’s overwhelming object is to supply the standardized workforce – that is, human capital with transferable skills – necessary to compete in the ever more globalized knowledge-based economy (2007, p. 16).

The user-generated content ‘movement’ – gathering together Flickr, wikimedia, blogs, podcasting, Facebook and YouTube – when aligned with student-centred learning and the market orientation that transformed students into consumers has provided a channel and venue for the emotive excesses of grievance, hostility and insolence against teachers and education.

More attention must be place on “situated literacies.”  Mary Hamilton describes this concept as a “time-bounded interaction between people and texts” (2000, p. 28). The blurring of leisure and learning has transformed the respect that is necessary to commence a scholarly journey.  A survey by the Association of Teachers and Lectures and the Teachers’ Support Network reported that one in six teachers had been cyber-bullied (Meikle, 2007, p. 5).  Harassment of instructors has emerged and digital mauling by groups of students is common (Pepitone 2006). What is stunning when reading the harassment and ridicule of teachers on Facebook is how few teachers have replied to the abuse.  Perhaps it is a mark of their self-respect that they do not scan and upload the corrected papers of these students who attack them for their peer group to view and therefore disclose the real rationale for their abuse.

The small space that remains for the left and progressivist forces is an unpopular, underfunded and marginalised commitment to ‘the public,’ through the preservation of public health, public education, public libraries and an affirmation of independent decision making, disconnected from corporations, public relations and marketing consultants.  It is from this context that the ‘digital natives’ discourse propelled a deep commitment to change for its own sake.  Once more – as if commemorating May 1968, the young ones are restless and the older generation does not understand.

Teach the technology

David Buckingham (2007, p. viii) affirmed that, “we need to be teaching about technologies, not just with or through them.” He is right:  form, media or platform do not speak.  They are not the message.  But content is mediated, framed and shaped by the platform selection to channel data.  To take Buckingham’s argument seriously, technology should not be used as a neutral platform for leisure, shopping or learning.  Instead, the technology must be taught and the communication system explored.  The power of multimodality is that students and teachers must demonstrate an awareness of how digitised platforms are best used.

Without intervention, without being forced to improve and engage with complex materials, most of us will stay in environments where we are content and safe, with our friends and families.  Like Paul Willis’s lads, we will mock those we do not understand, rather take the risk to learn from them.  Social media makes such a problem worse as we are surrounded by ‘friends’ who comment, chat, reinforce, ‘like,’ and support.  Learning comes from moving outside of our comfortable context.  Only by learning to learn – rather than learning to leisure or learning to labour – can information and media literacy becoming the foundation for scholarship.

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Biographical Statement

Tara Brabazon is the Professor of Education and Head of the School of Teacher Education at Charles Sturt University (Bathurst and Dubbo campuses in Australia and the Ontario, Canada campus in Burlington). She is also a Fellow of the Royal Society for the encouragement of Arts, Manufactures & Commerce (RSA) and head of the Popular Culture Collective.


Tama Leaver & Mike Kent
Editorial

Published Online: April 30, 2014
Full Text: HTML, PDF (316 KB)

Keywords: Facebook, Online Education, Massively Open Online Courses (MOOCs).

Introduction

The revolutionary zeal with which Massively Open Online Courses, or MOOCs, were embraced in 2012 ostensibly situated online education as completely new,  unprecedented, and entirely disruptive for the status quo of higher education (Pappano, 2012). Yet only a year later revelations of incredibly low completion rates (Pretz, 2014) and poor learning outcomes (Perez-Harnandez 2014) led to questions about whether the appeal and lifespan of MOOCs as a concept was already terminal (Strauss, 2013; Yang, 2013). While the rise and fall of MOOCs have both been radically overdetermined – they are an emerging if largely unpolished form of mass education, but certainly one that is here to stay in some form for the conceivable future – it is equally if not more important to recognise that teaching and learning utilising and via networked digital communication tools has a history as long as the World Wide Web itself (Kent & Leaver, 2014). Moreover, as the largest online social network in the world, Facebook has been part of the education landscape since its inception in a Harvard dormitory a decade ago. This special issue of Digital Culture & Education takes the tenth anniversary of Facebook as an opportunity to critically reflect on role of that platform in higher education, whilst simultaneously engaging with some of the larger questions about the place of education online, questions which pre-date the emergence of MOOCs by a significant number of years.

Situating Facebook and Informal Student Learning

At the time of writing, Facebook has over 1.28 billion monthly users, with over 800 million of those users logging onto Facebook each day, and over a billion people regularly accessing the social network using mobile devices (Facebook, 2014). Facebook fulfils and indeed normalises the widely cited basic features of an online social network in that it allows users to “(1) construct a public or semi-public profile within a bounded system, (2) articulate a list of other users with whom they share a connection, and (3) view and traverse their list of connections and those made by others within the system” (boyd & Ellison, 2007). While there are a plethora of social networking sites, Facebook’s size and longevity single the platform out and make it a particularly appealing tool for educators given the extremely high use and penetration rates, especially amongst students. While Facebook may have lost some of its youthful appeal, talk of Facebook’s decline is really just about a slowing down in growth, not even an actual reduction in the number of users (Marks, 2013). Moreover, the huge increase in the use of mobile devices to access Facebook, and the company’s insistence on the use of real names and ostensibly a singular identity (Zoonen, 2013), has situated Facebook as a space where any distinction between online and offline activities is increasingly meaningless. As Matthew Allen has argued in a previous issue of Digital Culture & Education, “Facebook is no longer one of several competing but similar online services: it is unique” (Allen, 2012, p. 214).

As Facebook emerged from a tertiary context, and given its huge popularity with students, it is no surprise that the impact of Facebook on student learning has been investigated. Ellison, Steinfield and Lampe’s (2007) early study, for example, found that using the platform could significantly increase a student’s social capital, reinforcing existing face to face relationships, but also forming new ones. Research by Selwyn (2007, 2009) analysing public posts by students on Facebook found that the platform was particularly useful in reinforcing and expanding informal learning, from the sharing of resources and materials, to bonding socially around education activities, to mutual support in stressful situations such as exam preparation. Work by Madge, Meek, Wellens and Hooley (2009) found that the platform was important both as a tool for increasing social interaction between students during their studies but also, significantly, for students to find and form networks with fellow students before they had physically arrived to begin their studies, thus forming networks in advance, and developing informal learning ties before formal education commenced.

The idea that Facebook use and social media in general would drain time students should actually be using to study persisted for some time, but work by Pasek, More and Hargittai (2009) largely dispelled with myth. Highlighting a more nuanced picture of Facebook use, Junco (2012) discovered that it was not Facebook use per se but specific types of uses which might influence the success or otherwise of students. Time spent on social games facilitated by Facebook as a platform correlated with less academic success, while time spent commenting and interacting with fellow students was shown to have a positive impact on a student’s studies. These various studies serve as a reminder that Facebook is not a singular tool, but a wide-ranging set of tools and practices tied together in an online platform. Different uses of this platform will inevitably lead to different outcomes, including different outcomes in terms of informal and formal education.

Formalising Facebook Use

Increasingly, Facebook is being integrated into educational design, including as part of formal assessment. Facebook groups are especially popular as supplements to existing interaction spaces in many units and courses, not least of all because the affordances of groups mean that students and educators do not have to technically become ‘friends’ on Facebook in order to interact with one another (Kent, 2014). In Facebook groups, students may be asked to share resources, annotate material online, critique or review related material, or simply comment on material raised during a unit. Indeed, students may be required to create their own Facebook groups or pages as part of engaging with a particular topic, or presenting material to an audience beyond that of their peers, tutor or marker. Moreover, for students who only interact online, Facebook can provide an extremely important space to interact with fellow students and with teachers, often compensating in some respects for the lack of informal and face to face discussion opportunities enjoyed by their campus-based counterparts (Leaver, 2014).

Shifting from Facebook as an optional informal learning space to a mandated part of assessment brings new concerns about higher education institutions forcing students to join corporately-owned tools which commercialise user data. As Croeser (2014) argues, such a mandate should be met with an attempt to increase students’ awareness of the data collection practices of Facebook whilst informing them of various software tools and best practices which can limit or obfuscate the platform’s profiling activities. It is important, too, to consider the impact of Facebook use on educators. Some may conscientiously object to joining the platform, while others may be wary of engaging with students in a space which they interact socially (Raynes-Goldie & Lloyd, 2014). This is complicated by Facebook’s insistence on a single account associated with a user’s real name, although this policy may be circumvented, albeit violating the site’s Terms of Use and thus risking the deletion of a Facebook account. There are dangers in terms of the wholesale integration and focus on Facebook in tertiary settings. Even if Facebook’s userbase is not actually declining, the notion of Facebook fatigue is popularising, with extended breaks from the platform being increasingly normalised. How this is reconciled with Facebook as an official university communication channel will be a significant question in coming years (Gallo & Adler, 2014). It is the ongoing question about the best configuration and, indeed, appropriateness at all of Facebook in formal higher education which the articles herein address.

In this issue

This special issue on Facebook in education opens with Eleanor Sandry’s ‘“Face to Face” Learning from Others in Facebook Groups’ in which Sandry utilises a theoretical framework from the work of Emmanuel Levinas to broaden the notion of a face to face encounter. For Levinas, a face has a broader meaning which is not necessarily about physicality or proximity at all, but rather about a much wider range of communicative acts. Inherent here, Sandry argues, is the idea that communication is always imperfect, always about engaging with the other, and recognising, then, that communication either physical or online, has an ethical dimension. Applying this frame to students and educators communicating within a Facebook group, Sandry argues that the less formal space and equal online footing, amongst other factors, has the potential to create a communication space where teachers and students both take responsibility for the way they communicate. Communication becomes a more level exchange, unlike, for example, the spaces created by Blackboard and other Learning Management Systems (LMSes) which attempt to replicate the authority and thus distance of educators from learners.

In Lucinda Rush and D.E. Wittkower’s ‘Exploiting fluencies: Educational expropriation of social networking site consumer training’, after rebuking Marc Prensky’s (2001) highly problematic but popular notion of the digital native, the authors identify a number of ways in which Facebook’s affordances effectively train users in certain skills necessary for successfully navigating and using the social network. Rush and Wittkower utilise a preliminary phenomenology to reveal six training categories that could potentially be meaningfully redeployed, or expropriated, toward more explicit critical thinking and pedagogical ends. They offer a case study in which students use Facebook to create and share a class-wide annotated bibliography, which in its design harnesses a number of the skills produced from Facebook use, and facilitates a situation in which students’ critical thinking is increased not just in the classroom, but well beyond those boundaries. Rush and Wittkower conclude by offering a number of different scenarios where skills learnt from Facebook could be expropriated for teaching and learning purposes, repurposing abilities needed to navigate a commercially-driven platform for critical thinking and reasoning.

In ‘Learning or Liking: Educational architecture and the efficacy of attention’ Leanne McRae offers a timely and critical look at the way higher education institutions en masse have embraced social networking services and other online tools in an attempt to compete for the eyeballs of students in an attention economy. While digital tools and connectivity have the potential to facilitate new learning spaces and modes of engagement, McRae argues that the erosion of boundaries between formal and informal learning may undermine the specificities and critical perspectives needed to facilitate and foster deep critical thinking. McRae argues that when students are positioned as consumers rather than learners, they tend to respond accordingly and demand an educational experience based on immediacy and the direct provision of resources and attention, when often a slower and more systematic approach to learning may be required to change the way thinking happens, not just the absorption of, or simply access to, information.

In the final article, ‘Separating Work and Play: Privacy, Anonymity and the Politics of Interactive Pedagogy in Deploying Facebook in Learning and Teaching’, Rob Cover also responds to the way Facebook use in educational settings may collapse particular boundaries. Cover details the use of Facebook in a first-year unit in which students voiced concerns about the way their educational activities on the social network were visible to their other friends and family on the platform. Students’ desire for their online work to be private was frequently framed in opposition to publicness, and yet Cover argues that this context collapse highlights the very instability of the public/private distinction. Following Henry Giroux, he argues further that Facebook as part of mass culture can and should be deployed precisely as a destabilising space, where not just the notion of private, but also the notions of author, audience and text are all potentially blurred. Cover argues that when framed appropriately, Facebook as a learning tool and space has the potential to make visible the way a range of concepts are destabilised, and that the co-creative identities and interactions fashioned via Facebook can lead to an extremely important mode of self-reflexive critical thinking.

Acknowledgements

The editors of this special issue wish to thank the all the authors who have contributed, the editors of Digital Culture & Education, Christopher Walsh and Thomas Apperley, for their encouragement and patience in the development of this issue, and the anonymous peer reviewers whose efforts ensured the scholarly rigour of this issue.

References

Allen, M. (2012). An education in Facebook. Digital Culture & Education, 4(3), 213–225.

boyd,  danah, & Ellison, N. (2007). Social Network Sites: Definition, History, and Scholarship. Journal of Computer-Mediated Communication, 13(1). Retrieved from http://onlinelibrary.wiley.com/doi/10.1111/j.1083-6101.2007.00393.x/full

Croeser, S. (2014). Changing Facebook’s Architecture. In M. Kent & T. Leaver (Eds.),

An Education in Facebook? Higher Education and the World’s Largest Social Network (pp. 185–195). London & New York: Routledge.

Facebook. (2014, April 23). Facebook Reports First Quarter 2014 Results. Retrieved May 1, 2014, from http://investor.fb.com/releasedetail.cfm?ReleaseID=842071

Gallo, M. L., & Adler, K. F. (2014). Facebook Fatigue? A University’s Quest to Build Lifelong Relationships With Students and Alumni. In M. Kent & T. Leaver (Eds.), An Education in Facebook? Higher Education and the World’s Largest Social Network (pp. 207–216). London & New York: Routledge.

Junco, R. (2012). The relationship between frequency of Facebook use, participation in Facebook activities, and student engagement. Computers & Education, 58(1), 162–171. doi:10.1016/j.compedu.2011.08.004

Kent, M. (2014). What’s on Your Mind? Facebook as a Forum for Learning and Teaching in Higher Education. In M. Kent & T. Leaver (Eds.), An Education in Facebook? Higher Education and the World’s Largest Social Network (pp. 53–60). London & New York: Routledge.

Kent, M., & Leaver, T. (2014). The Revolution That’s Already Happening. In M. Kent & T. Leaver (Eds.), An Education in Facebook? Higher Education and the World’s Largest Social Network (pp. 1–10). London & New York: Routledge.

Leaver, T. (2014). Facebook, Student Engagement, and the “Uni Coffee Shop” Group. In M. Kent & T. Leaver (Eds.), An Education in Facebook? Higher Education and the World’s Largest Social Network (pp. 121–131). London & New York: Routledge.

Marks, G. (2013, August 19). Why Facebook Is In Decline. Forbes. Retrieved from http://www.forbes.com/sites/quickerbettertech/2013/08/19/why-facebook-is-in-decline/

Pappano, L. (2012, November 2). Massive Open Online Courses Are Multiplying at a Rapid Pace. The New York Times. Retrieved from http://www.nytimes.com/2012/11/04/education/edlife/massive-open-online-courses-are-multiplying-at-a-rapid-pace.html

Pasek, J., more,  eian, & Hargittai, E. (2009). Facebook and academic performance: Reconciling a media sensation with data. First Monday, 14(5). Retrieved from http://www.uic.edu/htbin/cgiwrap/bin/ojs/index.php/fm/article/view/2498/2181

Perez-Hernandez, D. (2014, May 1). Passive MOOC Students Don’t Retain New Knowledge, Study Finds. The Chronicle of Higher Education. Retrieved from http://chronicle.com/blogs/wiredcampus/passive-mooc-students-dont-retain-new-knowledge-study-finds/52295#disqus_thread

Prensky, M. (2001, October). Digital Natives, Digital Immigrants. On the Horizon, 9(5), 2–6.

Pretz, K. (2014, February 3). Low Completion Rates for MOOCs. The InstituteRetrieved from http://theinstitute.ieee.org/ieee-roundup/opinions/ieee-roundup/low-completion-rates-for-moocs

Raynes-Goldie, K., & Lloyd, C. (2014). Unfriending Facebook? Challenges From an Educator’s Perspective. In M. Kent & T. Leaver (Eds.), An Education in Facebook? Higher Education and the World’s Largest Social Network (pp. 153–161). London & New York: Routledge.

Strauss, V. (2013, December 12). Are MOOCs already over? Washington Post. Retrieved from http://www.washingtonpost.com/blogs/answer-sheet/wp/2013/12/12/are-moocs-already-over/

Yang, D. (2013, March 14). Are We MOOC’d Out? Huffington Post. Retrieved from http://www.huffingtonpost.com/dennis-yang/post_4496_b_2877799.html

Zoonen, L. van. (2013). From identity to identification: fixating the fragmented self. Media, Culture & Society, 35(1), 44–51. doi:10.1177/0163443712464557

Biographical Statement

Tama Leaver is a senior lecturer in the Department of Internet Studies at Curtin University, and a researcher working in Curtin’s Centre for Culture and Technology. His research interests include social media, online identity, digital death and media distribution. He has published in a number of journals including Popular Communication, Media International Australia, Comparative Literature Studies and the Fibreculture journal. He is the author of Artificial Culture: Identity, Technology and Bodies (Routledge, 2012), co-editor (with Mike Kent) of An Education in Facebook? Higher Education and the World’s Largest Social Network (Routledge, 2014). In 2012 he won an Australian Award for University Teaching for Teaching Excellence in the Humanities and the Arts. He is currently researching the way birth, early life and death are changing in the era of networked digital communications.

Contact: t.leaver@curtin.edu.au

Twitter: @tamaleaver

Online: www.tamaleaver.net

Mike Kent is a lecturer in the Department of Internet Studies at Curtin University. Dr Kent’s main research interests, focus on the two main areas of tertiary and online education, as well as people with disabilities and their access to communications technology. He is co-author, with Katie Ellis, of Disability and New Media, (Routledge 2011), and co-editor, with Tama Leaver, of An Education in Facebook? Higher Education and the World’s Largest Social Network (Routledge, 2014). His work has also been published in a number of academic journals including The Journal of Online Learning and Teaching, M/C Media Culture, Fast Capitalism, Nebula and A/Q Australian Quarterly.

Contact: m.kent@curtin.edu.au

Twitter: @cultware

Online: www.cultware.com


Roger Saul

Published Online: May 1, 2014
Full Text: HTML, PDF (1.1 MB)

Abstract

This article examines the public YouTube profile of AnonyGirl1, the pseudonym used by a teenaged girl who takes to YouTube to narrate various aspects of her life. Using AnonyGirl1’s case as an object of analysis, the article considers the new narrative flexibilities that are shaping young people’s online explorations of self. On YouTube, where narrative linearity and fixity often come undone, AnonyGirl1 creates herself as a chimera of disappearing and reappearing video fragments that comprise an unstable, constantly changing entirety. In making and unmaking herself in fragments, AnonyGirl1 calls into question the presumed coherences of predominant youth narratives, negotiates her views about being young, and articulates processes of interior self-making through a mode of social expression that gives new form to its fluidities. Although the surfeit of narrative choices that AnonyGirl1 has at her disposal on YouTube come with a series of pleasures, the possibilities for self-construction that these choices provoke also come with debilitating pressures and confusions that she scrambles to negotiate. Amidst these pleasures and confusions, AnonyGirl1’s narrative offers a venue through which educators can think through the emerging complexities of young people’s online self-making practices.

Keywords

youth, adolescence, YouTube, online identity, post modern identity, narrative, new media

Introduction

On August 17, 2008, a black, female, 18 year-old Londoner who, under the pseudonym AnonyGirl1, had up to then made countless YouTube videos documenting her life since the age of 16 (videos that she coded sequentially so that visitors to her YouTube channel page could easily encounter her at various stages of her life), made an emotional address via YouTube that shocked many of her regular viewers. Her first few sentences captured the thrust of her message: “Hi, as some of you may know I’ve kind of announced that I’m leaving the AnonyGirl1 channel… I want to go. I want to go. I want to go…. I feel like the channel is based on someone I’m not anymore.” To this she added that she had already taken the step of deleting from YouTube all of her past videos, and that she would refrain from making any new ones for the indefinite future. In essence, she was announcing her erasure as AnonyGirl1.

This erasure proved temporary. Although having cited a slew of reasons for her disenchantment with YouTube – among them, the personal toll taken by the negative posts she was receiving about her videos, the suggestions that YouTube was no longer fun and that her older videos no longer reflected “the real me,” as well as her consequent desire to eventually make a ‘new’ start with videos that better reflected the self she wished to project – she nonetheless invited viewers to weigh in on which of her past videos they liked most, suggesting that she might take their feedback into account in reposting a few among them that best reflected her desired self. She eventually reposted twenty such videos. When taken together, this new collection of videos – comprising some older and some more recent ones – created an instantly altered persona, swiftly reshaping her public, online narrative.[i]

Drawing upon these twenty videos as objects of study, this paper suggests that entrenched notions of adolescent development are coming under assault – productively so – courtesy of many young people’s public, online identity work. This work enables public stories of self to be created and recreated according to endlessly altering formulations and reformulations. In the online world – which is less constrained by the ordering mechanisms of space and materiality, and where the splicing together of simulations and events can lead to a loss of chronological order and context-dependent sequences (Eriksen, 2007; Karsten, 2007) – the ways in which we make ourselves is altered. These are not necessarily grand alterations – in the case of young people like AnonyGirl1, these alterations function as a series of narrative disruptions that arguably signal a new iteration in the social construction of adolescence, one in need of continued inquiry given the proliferation of online subject-making practices carried out by young people. For educators in particular, conducting said inquiries serves an important function: it contributes to knowledge making about the changing needs and practices of education’s most important subject – the subject who learns.

That online life offers individuals fluid modes of identity expression is by now hardly a novel suggestion, but what online video collections like those of AnonyGirl1 newly offer us is a series of commentaries about the classificatory impositions with which we have taken to constructing many modern social categories, adolescence among them. Online expressions of self offer us a partial glimpse beyond these impositions by elucidating the hybridities that perhaps precede the neat categorising imperatives that are a condition of these constructions. To this extent, the work of defining and delineating how young people like AnonyGirl1 elaborate upon such impositions in their videos – by sharing what they can look like, why it might be important to think about them, and what their enactments might mean for how we make sense of adolescence as a socially constructed category in our contemporary moment– is the work of this paper. What follows, then, is an exploration of adolescent subject making practices as seen through the case of one young person’s – Anonygirl1’s – public YouTube narrative, wherein she inspires a series of compelling entanglements through which to think through the new narrative complexities enacted by young people’s online communicative practices.

Adolescence and the Current Media Moment

I am particularly interested in making sense of AnonyGirl1 according to the conditions of our current media moment, which Rattansi (1994) has long since suggested consists of, “The almost instantaneous, often ‘live’ transmission of images,” which, “now have the effect… of…. producing even greater incoherencies in the public narratives and images of time and space through which individuals and ‘local’ communities can create secure identities” (p. 33). His quote augurs how the dizzsying speeds with which many of us now customarily transmit information between one another, and the myriad platforms we now have for doing so, can provoke new kinds of personal and social relations, not to mention new explanatory strategies for making sense of them.

Counted among these relations are those we make with ourselves. Which is to say that among the consequences of our participation in current methods of mediated communication – the pervasiveness and intensities of which increasingly work to render the material and the virtual inextricable within our everyday realities – are possibilities for experiencing new ways of being in the world. On the Internet, Bratich (2006) suggests, human subjects are more nomadic and flexible, whereby the “individual is characterised in micro-capacities to divide and distribute itself in continuous variation” (p. 71). These conditions put the notion that we are wholly coherent selves with stable interiorities, rather than technological “variables to be modified in their relationship to each other” (Bratich, 2006, p. 71; Foucault, 2003/1982), under strain.

Rattansi (1994) offers an interesting delineative that helps deepen the claims of the latter. In a particular take on what has often been called the ‘postmodern turn’ – i.e. the “decentering and de-essentialising [of] both subjects and the social” (p. 15) evoked here – Rattansi eschews this ‘turn’ and reconstitutes it as a ‘frame,’ a simple play on words that arguably portends a particular set of implications for understanding what this postmodern media moment is and means. For here a “postmodern frame” implies not a move away from, as does a ‘postmodern turn’, but rather a move toward; toward a more acute mode of looking at an already existing set of processes. In other words, Rattansi (1994) suggests to us that our various formulations for making sense of what now seem like pervasive processes of ‘decentering and de-essentialising subjects and the social’ should not so much be concerned with the supposition that these processes somehow signal a move in the direction of anti-foundationalism (p. 17), but rather with how these processes can allow us to scrutinise the modernising acts from which they evolve, and, for that matter, precede.

Rattansi (1994) defines modernity as an over-arching analytical category of classifications around which much of the world and its current meanings are staged (p. 16), and postmodernity as critical reflection on the character, foundations and limits of this staging (p. 17). The postmodern frame, he says: “… is a mode of being both inside and outside modernity, of stepping back, or out, and looking in, while still having one foot and one eye, so to speak, inside modernity…. [It is] a frame within a frame, and modernity might be regarded as being both object and subject within this frame (p. 19).

What looking through the metaphorical lens of a postmodern frame therefore suggests is the prospect of seeing what the categorising imperatives of modernity sometimes work to obscure. What it perhaps allows us to see is that human subjects are not singular or timeless – instead they are technologies, imaginary in form, and contextually situated; by this logic, they are also sites of hybridisation, of fusion, and of incommensurability (p. 28).

Haraway (1991) has famously called contemporary human subjects cyborgs, a term meant to connote how it is that we embody the particular technologies (fusions, hybridities) of our current moment. Like the postmodern frame just described, the cyborg serves as a useful metaphor in presaging the conditions from which YouTube profiles like those of AnonyGirl1 emerge, for it too can be evoked as a means of critically intervening against the conditions of modernity (Bernardi, 2002, p. 155). Haraway (1991) defines a cyborg as a “kind of disassembled and reassembled postmodern collective and personal self” (p. 163). Congruous with how “communications technologies and biotechnologies [have become] the crucial tools re-crafting our bodies” (p. 164), a cyborg therefore refers to a “hybrid of machine and organism” (p. 149), to a “creature of social reality and fiction” (p. 150). As I read Haraway, a cyborg – i.e. us, in current form – is a fiction because it is something we create. It is an assembled projection of our social and bodily selves onto various inorganic canvases – the multiple texts of our exterior lives – that we construct and are constructed by. But it is real precisely because it is us. It is, writes Haraway (1991a), “our processes, an act of our embodiment” (p. 180). In view of these entanglements, what our cyborg selves are therefore not is immutable, nor are they innocent; they are not, Haraway suggests, “born in a garden” (p. 180), a thinly veiled biblical reference that functions as an important suggestion about the place of hybridity in our constitutions of self. Purity, immaculateness, unity and fixity are abandoned according to such constitutions, abandoned in favour of conceiving of human subjects as “hybrids, mosaics, chimeras…. ” (p. 177).

All of this has consequences for how we understand adolescence as a category of modernity. Whereas what we now understand as adolescence did not exist as a universally defined social category in pre-modern societies, France (2007) writes that uneven boundaries between different age groups always have; they were generally separated along lines of dependence (child), semi-dependence (young adult) and independence (adult). Early conceptions of “youth” eventually evolved out of these categories, but these separations were not perceived or administered according to ways we might conceive today. Notions of modern day psycho-social development based on age specificities were not universally recognised. Definitions of youth were locally defined and varied according to roles and responsibilities within the local purview of family, work, community and related markers (D’Eramo, p. 2003).

Most trace conceptions of adolescence, a modern iteration of youth premised on universal assumptions about its presumed characteristics as a temporal “life stage” (Goosens, 2006), to the work of American psychologist G. Stanley Hall, who in 1904 wrote the two-volume book, Adolescence. In it, Hall put forward a universalised temporal definition of adolescence, connected to puberty, and characterised by the “storm and stress” of a series of emotional upheavals. His work helped make popular the notion that adolescence is a naturally occurring developmental stage of predictable cognitive and behavioural attributes across time and place, that adolescents (and thus societies) have to be protected from their acute susceptibilities to corrupting influences (emerging sexuality, unstable behavioural urges, social ills), that these susceptibilities only ease with their proper departure into a more emotionally stable phase, adulthood, and that proper care for the young is intimately tied to broader popular concerns about the ‘healthy’ development of society and its corresponding markers (the state of the nation, the evolutionary ‘progress’ of its people, the sovereign realisation of national imperial ambitions, racial purity, the advance of civilisation, and so on (Lesko, 1996, 2001)).

In their more contemporary iterations, social constructions of adolescence have been embodied in the form of the ‘teenager,’ a term some suggest probably appears for the first time in the early 1940s (Danesi, 1994; Graham, 2004) Born largely out of marketing and advertising strategies that sought to capitalise on the spending power and leisure time of increasingly large numbers of post-war youth (Graham, 2004, p. 26; France, 2007, p. 16), markets of and for ‘teenagers’ were created, mostly in the ‘West,’ and the ‘teen years’ were increasingly narrated in the popular imaginary as constituting a distinct phase of life where young people could be more or less “assumed to act, think, and behave in specific ways” (Danesi, 1994, p. 140). These narrations vacillated between intense anxieties about what was assumed to be the explosion of a ‘youth culture,’ which comprised young people who were defining themselves through their new leisure time and were presumed to be in need of protection from its offerings, and celebrations of youthfulness based on now familiar images of idealism. ‘Culture industries’ such as film, music, fashion and television increasingly sought to both create and cater to teenage needs through representations of and for them, so that the growth of these industries and the teenagers that made active meanings of their productions helped to form each other (Danesi, 1994, p. 15-22).

By now challenges to social constructions of being young are commonplace, and much scholarly work has been devoted to the project of ‘denaturalising’ youth, adolescence and/or the teenager (Lesko, 1996). In this regard, the social construction of modern adolescence as a distinct life stage, or the processes by which the temporal boundaries of adolescence have come to be defined and reified over time, has been convincingly linked to a range of other phenomena in many Western societies, most prominent among them: urbanisation and industrialisation, which has traditionally resulted in shrinking families; the creation of middle and leisure classes, and with these factors the temporal extension of the category adolescence (Young-Bruehl, 1996, p. 329); public reactions to industrial child-labour practices, the effects of which often help to “legislate youth into existence” (France, 2007, p. 11; Danesi, 2003, p. 5); the rise of the modern statehood, an occurrence usually accompanied by the centralised administration of populations, and therefore by imperatives to create adolescence as a category according to the concomitant “biological determinisms of politics” (D’Eramo, 2003; Pillow, 2004); and the growth of compulsory education, which has traditionally given young people access to resources not solely determined by work, and which in its implementation has usually resulted in prolonged notions of childhood and adolescence (Young-Bruehl, 1996, p. 331). All of these works suggest that adolescence is not a stable category but a fluid one, subject to altered and altering definitions depending on history and context (Mallan & Pearce, 2003).

Introducing Anonygirl1

As an educator interested in how new youth cultural practices are challenging long standing discourses and definitions of being young (Saul, 2010; Saul, 2012), I became interested in AnonyGirl1’s work precisely because of how it seems to challenge entrenched popular cultural definitions of adolescence. An introduction to AnonyGirl1’s YouTube profile would be useful here.

AnonyGirl1 identifies herself a vlogger (i.e. a video blogger), and the aesthetic character of her videos is usually similar: she sits and speaks directly to the camera that faces her – the camera from which we view her – in a series of long takes with few edits, changes in perspective or stylistic variances. She always presents the same self in her videos (as opposed to the identity experimentations other YouTube vlogger’s at times use the site to perform, see Wesch, 2008; Saul, 2012), and in them she charts the events and emotions that shape her life, shares her various opinions as they arise, and aims to entertain and interact with others. Embedded in these practices is what appears to be a series of underlying values – she utilises YouTube, at times to the point of seeming pretence, to project a continually happy self, to court fame, to show off the skills that she perceives can prompt her fame (usually singing), and to more broadly communicate with a range of anonymous others as a means of carrying out these aspirations.

Many of her videos take on a sense of excitement about the cross-cultural accidents, communicative discrepancies, and differences in point of view that can arise on a social platform of YouTube’s scope and reach (see ‘AnonyGirl1 Appendix’ 7 July, 2007; 11 February, 2008; 12 May, 2008; 31 July, 2008). And yet underlying these evocations of excitement, it seems, is a more deep-seated desire on the part of AnonyGirl1 – namely, that her videos be seen as the source of these excitements and the entertainments that they might provide. In other words, if AnonyGirl1 sees communicating on YouTube as a novel source of pleasure and entertainment (i.e. “a place where we can talk about whatever we want, whenever we want,” (31 July, 2008)), then her videos show that she wants to be seen as the source of that pleasure, wants to locate herself at its centre. Accordingly, this desire often translates into an projection of self that sees her take on a persona of exaggerated cheerfulness; it is as if she thinks that doing so might further work to cement her videos as a source of pleasure, to the extent that she works hard to manage others’ perceptions of her videos as such (20 April, 2007; 12 May, 2007; 6 June, 2007; 10 June, 2007).

That said, what seems to underlie AnonyGirl1’s desire to be seen as happy, as well as her desire for her videos to be seen as a source of pleasure, is a desire to be seen at all. In this regard, her self-display – which comes across as being as much motivated by seeing herself reflected on YouTube as by being seen by others – is a recurring thread in her videos (12 June, 2007; 28 August, 2007; 18 February, 2008).

Correspondingly, one of the things AnonyGirl1 wants from YouTube, indeed one of the reasons she makes videos, is a desire for some sort of renown. She wants to be famous, and she sees YouTube, with its broad scope and reach, as a platform for achieving fame (28 August, 2007; 1 November, 2007; 27 January, 2008; 26 June, 2007), and for more broadly achieving some ascendency toward greater popularity and prestige.

Eventually – and there is to my knowledge no indication that she ever reaches any sort of fame beyond the peripheries of her online profile – AnonyGirl1 seems to come to grips with the fact that her YouTube videos will not make her famous, and she moves toward negotiating the consequences of this realisation (5 November, 2007). This initiates what perhaps becomes a series of deeper engagements by her of her views not only of her changing self, but also of the heretofore unexpressed by her (and perhaps unseen by her) ways in which various discourses of adolescence – and specifically various socially and culturally sanctioned narratives of adolescence – have operated to inform her expressions of self on YouTube (as well as her conceptions of herself) in ways she had not realised. To this end, in her video “Why is it so hard to accept that maybe were [sic] just normal?” (5 November, 2007) she states:

You know there’s this weird statistic that says 90 percent of teenagers think they’re going to grow up and be famous. Well, it’s actually pretty much true. And I will admit, I’m pretty much in that 90 percent. Well not now, a lot less now, now I’ve kind of grown up and realised I’m not gonna be the next Madonna… But – when I was like 15, I swear to God, literally in my head, no doubt about it, I thought I was going to be famous.”

To her own observation she then responds:

Why do they actually think they’re gonna be famous…I thought about it and I thought…No the real question is… the real question we should be asking is why is it so hard to accept that maybe we’re just meant to be normal…. Nothing wrong with it so I don’t understand why it’s really hard to accept.… I really don’t know what it is. And if anyone can help me accept my normality, then please go ahead.

AnonyGirl1 negotiates social narratives of adolescence

With the preceding quotes, AnonyGirl1 signals what comes to form an important thread in her videos. Namely, as a function of exploring her emerging questions about herself (“can anyone help me accept my normality?”), she starts to interrogate her role within the broader social narratives of adolescence that she imagines herself to be wrapped-up in. What becomes a project of working to destabilise parts of her own YouTube narrative therefore becomes inextricably linked with a project of working to destabilise the social narratives that have helped to inform it. A negotiation of Giddens’ (1982) “duality of structure” comes to mind here: as AnonyGirl1 begins to poke at the presumed coherences of commonplace social constructions of adolescence – imbued as they are with well-instantiated tropes of lost innocence, instability, storm and stress, hormonal imbalance, and identity crisis (Graham, 2004; Lesko, 2001) – she draws on YouTube to negotiate what becomes an emerging sense of the fluid parameters that inform these constructions. More so, she negotiates how she might re-imagine these parameters – and thus herself – anew. Her negotiations – in that they exemplify how one young person might draw on YouTube as a resource to critically comment upon social constructions of adolescence – seem significant if only for this reason. Yet, as we will see, they are made all the more significant because they initiate for AnonyGirl1 a series of unforeseen complications that push the narrative depths through which she constructs herself still further.

The video “Give us a chance” (17 October, 2007) offers an instance of how AnonyGirl1 goes about commenting upon cultural stereotypes about young people of concern to her. In the video’s opening shot, she looks at the camera that faces her, and from a seated position on her bed she smiles says, “Hi guys…  I’m 17. Do you know what that means?” With this she moves closer to the camera and says: “Well, that probably means I’m going to pull out my hood” (she now pulls a hood over her head), “take out my shank” (she now reaches below the frame and pulls out a large meat cleaver), “and in about a half hour, I’m gonna mug you.” With this she removes her hood and puts down her “shank” before launching into an editorial style commentary on the role of the media in perpetrating cultural stereotypes casting young people as disproportionately violent (Stern, 2005; Tanner, 2001). In specifically focusing on the particulars of her local U.K context, she contextualises her claim by offering that, “According to every single U.K. paper, magasine, and everything that the government seems to say about us U.K. London teens, we’re all just part of this yob culture. And I’m pretty much here to say no, we’re really not.” As she continues to speak, she alternates between the roles of teen spokesperson (“…I’m just speaking out for every teen that isn’t part of this gangster lifestyle that the media proposes that we’re all in”) and advocate (“we’re not all so easily led like sheep… we have minds of our own”). In closing, she returns to her earlier criticisms of mainstream media by prompting her viewers to, “Just realise that what is being to you force fed to you, by the media, is not who we are.”

In another video, this one called “What is an Adult?” (12 May, 2008), AnonyGirl1 launches into a more substantive personal commentary on the inanity of what she believes to be the precarious social boundaries that define adolescence and adulthood (D’Eramo, 2003; Lesko, 2001). The video comes on the precipice of what she tells us is her upcoming eighteenth birthday. In professing to be struggling with the arbitrary abruptness of the sudden change in social position soon to be bestowed upon her by legal adulthood (“I’m going to be no different on Monday than I am right now”), she pulls out a dictionary under the guise of lending her struggles some clarity, and reads from it: “Adult: a person who is fully grown or developed or of age. Adult: having attained full sise and strength. Adult: one who is legally of age. And adult… a mature person.” These definitions seem partly recited to dramatise her confusion (“Um…  I don’t really know what to think of this,” she says), and they also provide fodder for her to work through the fallacies she associates with what she has just read.

For example, in response to the assertion that an adult is “a person who is fully grown or developed with age,” she criticises the presumed coherences of rigid adolescent developmental narratives of completion and arrival (“I’m not growing?” she asks rhetorically, before detailing what she indicates is the misanthropic nature of this kind of thinking (“people live until they’re like 80… to say that at 18 I’m fully grown – mentally and physically – I have to disagree”)). Likewise, in response to the notion of “Having attained full sise and strength,” she now employs parody as a strategy of retort – in this case she repeats the word “strength” to herself as she taps her left bicep (her bicep is small), and we are made to understand that its feebleness evokes the opposite of physical strength (“So, no adult [to] that,” she concludes). She challenges the dictionary definition of an adult as a “mature person” by pointing out what she sees as its irreconcilable inconsistencies (“I’m pretty sure I know lots of people over 18 who are really immature. And I know loads of people under 18 who are way too mature”). And finally, she says, “there’s this last one, one who is legally of age,” to which she closes, “You can’t judge adulthood on maturity. You can’t judge adulthood on sise, shape, attitude, umm, psychological well-being…. I just have issues with the whole coming of age thing.”

As evidenced in the videos above, AnonyGirl1, in part comes to utilise YouTube as a vehicle through which to define herself in relation to broader social imaginaries of adolescence, and through which to find a voice and an audience in doing so. For example, at the time I retrieved “Give us a Chance” (17 October, 2007), a video which was “featured” on YouTube and thus rescued from relative obscurity, it had amassed over a million video views, easily a much larger number than any of her other listed videos.[ii] AnonyGirl1 “finds a voice” on YouTube in that her participation there – what with the opportunity it provides her to be seen and heard by others clearly interested in what she has to say – seems to both embolden her to explore the kinds of issues that she does, as well as validate her reasons for caring about them (validation comes in the interest and responses she receives from others). The fact that her videos appear to her to have resonance with others further seems to embolden her to personalise the issues she speaks about – which in the videos just mentioned translate into her coming to grips with how broader social imaginaries of adolescence operate through her. For instance, her far-reaching question “why is it so hard to accept that maybe we’re just normal,” translates to “if anyone can help me accept my normality, than please go ahead” (emphasis added). As Gee (1996) suggests when he writes that, “The individual instantiates, gives body to, a Discourse every time he or she acts or speaks, and thus carries it, and ultimately changes it, through time” (p. 145), she seems to articulate these imaginaries as a means of negotiating and challenging them.

Of course, AnonyGirl1’s articulations along these grounds are also fraught with contradictions, and do not come as neatly packaged or coherent critiques of predominant discourses of adolescence. For example in frequently holding to what “teens” are not, she often ends up making a case for what they are. When, for example, she assumes the role of spokesperson and states, “We’re not all criminals,” or “we… deserve the respect to be treated like normal people” (emphases added), she is engaging in a similar sort of grand classification that she criticises mainstream media of perpetrating. In articulating how and what teens are not, in other words, she is implicitly making a case for what they are, absent the recognition of how such a stance might be equally confining (Yon, 2000, p. 102). By the same token, in her sweeping attack on “media,” an apparently monolithic entity in her formulation, she ignores that she too exists in a mediated space as she makes her comments, and so appears incognisant about how the space she operates within might likewise help to shape the expressions she creates. Still the more pressing point I wish to highlight here is that her attempts at taking a critical stance in questioning social constructions of adolescence seem, on the whole, enabled and empowered by her participation on YouTube. In view of the communicative possibilities YouTube offers her she is therefore able, through her videos, to speak to and for young people in a way that fulfills its suggested promise of being, in her words, “a place where we can talk about whatever we want, whenever we want” (31 July, 2008).

And yet, in drawing on YouTube to express her views about the world and her place in it, and in inviting others to share their views about what she says, AnonyGirl1 soon finds herself in the position of shielding the narrative she has constructed from a series of incursions she does not seem to have anticipated. In somewhat of an irony, then, when she achieves a modicum of fame within the parameters of YouTube’s community (which, again, from early on seemed an implicit desire), the consequences of achieving it become unsettling for her. More so, they lead her to seek a different kind of experience from YouTube – again, one that further pushes, in ways unforeseen, the narrative parameters through which she works to make herself.

The most prescient example of what seems to unsettle her, an example that foreshadows the discussion that follows, comes in the videothe morning after the night before” (19 October, 2007). This video takes its name in reference the prior video “Give us a chance” (which recall, involves AnonyGirl1 wearing a hood, holding a knife and criticising negative portrayals of adolescence). After having reached unprecedented (for her) levels of popularity as a result of “Give us a chance,” AnonyGirl1 offers that things have “been nuts on my channel.” “The morning after the night before” therefore comes as a response to her newfound fame. And she devotes much of it to recounting a few from among the multitude of comments her video prompts. Below is a sampling of the comments she receives, which she recites aloud:

  • “Why does stuff like this get in the top views. I think my brain just pooped.”
  • “Marry me please.”
  • “Shut up.”
  • “Sort it out love – you stupid wannabe gangster.”
  • “Well said girl, you have courage to make this video.”
  • “What’s the name of your disease girl?”
  • “I want you to piss all over me.”
  • “Shut up and get a boyfriend.”
  • “Take the knife, take your hand, and slice your wrist, and please, stop making crappy videos.”
  • “I watched you on mute and it was just as good.”
  • “You’re retarded.”
  • “You’re hot.”
  • “People hate you because you’re black, not because you’re a teenager.”

Though AnonyGirl1’s reactions to these responses are not always easy to read – she makes sarcastic quips in reply to most of the different comments she cites, and often seems delighted in doing so – she also appears damaged by them. The effect makes for what seems like a curious mix of expressions. On the one hand, she basks in the attention she is suddenly receiving, and happily boasts about the sise of her newfound platform. And yet this belies what seems like a different set of emotions lurking beneath the surface, which she signals in what is often veiled commentary. This culminates when, toward the end of her video, she says, “It was really fun insulting you guys back. So as much as you’re thinking you’re getting to me, it’s not really working. Like a teeny, tiny bit, but you know, I can hide behind the safety of my computer too.” And, as if to reinforce that she is unaffected by some of the difficult comments she has received, she closes with, “I’m enjoying this experience, and I’m not leaving YouTube for no one,” an admission that only seems to highlight the opposite.

Her comments in a subsequent video confirm that other people’s negative comments are indeed what brings her to the place of removing and then re-adding different combinations of her videos in ways previously described and, it might now be added, in ways that she seems to hope will present projections of herself less likely to provoke antagonism from others (17 August, 2008). In this regard, her attempts at exercising control over her YouTube persona bring her to the place of narrative strategising alluded to earlier, the implications of which I now take up.

A narrative in disarray

When AnonyGirl1 chides her antagonists by calling attention to the ethics of their anonymity (“I can hide behind the safety of my computer too,” she says), she identifies a predominant communicative feature on YouTube, one that she eventually draws upon as an important resource. This communicative feature – evoked through notions of “hiding” and “safety” in AnonyGirl1’s quote, a quote which calls to mind how online commentators are often shielded from the consequences of their comments – finds form in what might be called a disembodied subjectivity, in the sense that the comments (both textual and video) of people who participate on YouTube (not to mention elsewhere online) are to varying degrees detached from the bodies who make them; and yet however tenuous are these links between body and speech, each works upon the other in ways that are consequential and affecting for the ‘subjects’ caught up in their circulations. AnonyGirl1, for one, is demonstrably affected by the incitements that these kinds of circulations produce – their vulgarities upset her. Yet she too finds a reprieve in effecting her own ‘disembodiments’ on YouTube. Doing so allows her to construct and to reconstruct, and thereby to negotiate her existence there. In the final section of this article, I explore how AnonyGirl1 negotiates YouTube’s flexible narrative structures and, in particular, what she teaches us about young people’s subject-making possibilities and practices on YouTube in the process of doing so.

When AnonyGirl1 reaches into her YouTube past and changes it – which happens when she takes the bold step of temporarily removing all of the videos that had for a long time comprised her YouTube profile, then later reposts twenty among them, before finally removing the latter and posting still new videos – this has the effect of profoundly changing the intact narrative she leaves behind; it alters who she is as she appears on YouTube. The iteration of AnonyGirl1 that I have thus far explored – the one which focuses on the roughly twenty videos she eventually reposts after deleting all of her past ones – is therefore but one of many possible iterations of her profile that I might have encountered had I retrieved it at different times. That said, what seems most interesting in investigating AnonyGirl1’s story entails not so much the act of mining the precise ways her story changes with each successive rearrangement of her YouTube profile – simply aiming to decipher these changes strikes me as a less penetrating practice than thinking about what it means that she can change her story. In this case, what seems most interesting in investigating Anonygirl1’s story entails asking what it means for her, and for others like her, that there exists a popular cultural space where this kind of public reordering of oneself is possible.

In one sense, AnonyGirl1 begins to answer this query by illustrating how she is able to complicate familiar narrative precepts in making herself on YouTube. In particular, the story of herself that she leaves on YouTube abandons presumptions of fixity in terms of its configurations. To the extent that narrative order is achieved through succession – in that bits and pieces of information must be linked as a condition of its intelligibility (Murray, 2003) – AnonyGirl1’s work redefines succession by remaking it into a flexible concept. What links two or more of her successive videos, this is to say what links the information that we must inscribe into the empty spaces between her videos in order for her story to hold together, is rendered unstable by her. When one of her videos gets removed, let alone re-added later on, viewers must forge new links between what remains, new links that come with new consequences for how we might understand her.

This mode of making oneself puts a strain on “modern” narrative imperatives of adolescence, where demands placed on narrative experience often prise notions like unity, succession, completion, and arrival (Lesko, 2001). On the contrary, the story-making apparatuses available to online participants on YouTube and elsewhere allow them to somewhat disengage from these imperatives. When AnonyGirl1 adds and removes videos of herself, she demonstrates how time gets reorganised as an exceedingly flexible apparatus in her story of self; she destabilises configurations of events in time by showing that what once existed as sequential can be manoeuvred in various ways. In this sense, we might even say that time is de-spatialised within this context, which is to say that the information and events that we inscribe onto time in order to render its permutations intelligible to us – in this case, displayed in the form of making a series of videos about one’s life and giving them a sequence with the expectation that this sequence will tell viewers something important about the video maker – can on YouTube be endlessly recast in support of making oneself in temporary ways that one sees fit. The possibility of adding, re-adding, recombining and eliminating events in time, as AnonyGirl1 does, therefore causes time to lose its determinist assumptions. Time becomes unbound as something fluid under these conditions, and making oneself according to these fluidities opens up different possibilities for reshaping one’s imaginaries of self.

In the case of AnonyGirl1 in particular, the act of constructing herself in a space that makes available the possibility of changing the markings of her past – a circumstance which in turn allows her to continually recreate her present – creates a situation that seems especially interesting in terms of one of its implications (and in its subsequent complications). For what she does under these conditions is to bring to the exterior what might more commonly be thought of as a deeply interior process. Specifically, in reshaping her projections of herself by adding and removing the videos she makes, her public work of actively reconstructing her past through the varying gases of her present not only mirrors something salient about the internal machinations of these processes, but it gives these machinations meaning and expression within a social context. This seems especially significant when considering how it is that narratives find form within social worlds – namely, they are constructed through language, and organised in relation to social and cultural frames of reference, so that they can be grasped and negotiated by self and other alike (Murray, 2003, pp. 99-100; Hall, 1997). And yet in spite of this, attempts at giving narratives form through everyday speech are typically less flexible than in most acts of thinking or imagining. In this context, the significance of what AnonyGirl1 demonstrates is that on YouTube there seems a sort of opening within which the act of speech can resist some of the fixity that is usually endemic to it. When telling a story on YouTube, embedded in its telling is the opportunity to reconstruct what has been said about it after it has been told.

In previous sections I have covered how AnonyGirl1 plays with such permutations on YouTube, how they become an important resource for her in affording her the chance to express her changing conceptions of herself, and how she harnesses these resources in ways that both embrace inconsistencies and contest fixity in terms of the narrative of self she constructs. What needs to be added here is that for all that these conditions offer AnonyGirl1 by way of narrative resources, the possibilities they offer her also come with perilous consequences. In a context where endless refigurations of self are possible, what often ensues is a sense of confusion that at times seems to overwhelm her. Her confusion in turn raises a set of peripheral questions that, even if unarticulated by her, seem to hover over her various expressions of self: How do I make myself in this space of expansive possibilities? According to what parameters can I, or should I, define who I am here? On what terms might I aim to redefine who I am here? And how, if at all, might I stake out a personal space within this shared cultural context of meaning-making?

For AnonyGirl1, what eventually emerges in this context is not a continuation of her work of making herself through her expressions of self on YouTube, but instead a now familiar moment where she completely unmakes herself as a presence there. In trying to make sense of this moment, consider again the quotation, now in extended form, from the video that I began this article by speaking about:

Hi, as some of you may know I’ve kind of announced that I’m leaving the AnonyGirl1 channel. And, I’ve kind of just randomly done it. I was just like God, I want to go I want to go, I want to go. I know you’re probably thinking, ‘where did this come from.’… I’ve been thinking about it for a while.… I feel like the channel is based on someone I’m not anymore. I’m not the same person that you guys all, I don’t know, enjoy to watch.  And I get comments everyday saying, ‘your old videos are better. You used to be so much more fun and you used to be so much cooler. Blah blah blah.’ And that kind of takes a really big toll on you when the person you’re being in your videos is yourself. And for someone to come along and say ‘oh, you used to be so much cooler, you used to be a lot better back in the day….’…  For someone to completely be digging at who you are… it got to me. I shouldn’t have let it… I don’t know…. I’m just kind of, I’m overwhelmed. (17 August, 2008)

In this same video, she also expresses a desire to restart her YouTube experience anew (“I need to start fresh” and to “start again” she alternately repeats). Likewise, she fantasises aloud about the possibility of having “a new channel” with “no subscribers,” citing as a reason that, “I just – it’s time to take a break again, sorry, but this time a real break and come back as the real me….” And towards the end of the video she offers:  “Umm, I need your opinion on what to do with these old videos. I want to just get rid of them. Maybe, I don’t know, unless there are ones that you want back…”

Of course we now know that AnonyGirl1 removes her videos from YouTube after this moment, before returning twenty of them a short while later, but what she signals in negotiating this departure is interesting. In the midst of announcing her own removal from YouTube, when she comes to the point of mentioning whether to repost several of the videos she has removed (“Umm, I need your opinion”), it seems clear that she is unable to leave behind the seductions that YouTube offers her in terms of affording her the chance to mend what she deems to be forever reparative in such a space (namely, her projections of herself, as well as the responses that she receives as a consequence of airing these projections). We see this most perceptibly in the fact that in spite of being “overwhelmed” and needing to “start fresh,” she still courts input from anonymous others in pursuit of these reparations.

Giddens’ (1991) notion of a reflexive self, a conception of selfhood that posits that our current historical moment is characterised by endless decision making apparatuses that prompt us toward negotiating constant questions about who we are and who we might be, seems prescient in this context. What AnonyGirl1 seems to have to constantly negotiate on YouTube is a surfeit of possibilities about how she might construct herself. And the preceding quotation makes clear that she amends to these possibilities a sort of self-imposed discipline, one that is clearly informed by the impressions of others, and that both produces and constrains her behaviour. Her expressions of self on YouTube are therefore not simply amorphous incantations of a disembodied self that she constructs there.

This in turn raises the question of what it is that really precipitates the emotions she expresses in the preceding extended quotation, what it is that specifically becomes “overwhelming” to her with regard to her presence on YouTube. Is she overwhelmed by the difficult commentary she at times receives from others about her videos, or is her angst also a consequence of the dissying narrative choices that YouTube provokes for her? The answer at least partly seems to be that while AnonyGirl1 aims to manage her narrative and is seduced into thinking that she can, YouTube’s expansive possibilities for doing so leaves her struggling to grasp for meaning amidst its surfeit of choices.

In this sense, what this finally alerts us to is perhaps a fitting irony considering all of the ambiguities that AnonyGirl1’s case presents – in context of the endless narrative choices AnonyGirl1 has at her disposal on YouTube, and in context of the pleasures and disappointments she evidently experiences in engaging in these choices, what she paradoxically seems to chase amidst these conditions is some sense of fixity. Put differently, for all the narrative fluidities that her story exemplifies, there is a sense in which she yearns for stability and permanence as a reprieve from these fluidities. We see this in the preceding quotation when she idealises an earlier time on YouTube (she dreams of “a new channel” with “no subscribers”), which her comments seem to signal represent for her a less complicated set of conditions, and thus a position from which she might begin to fix into view a new conception of self (and specifically a new “real” self). By the same token, we see evidence of the same in her repeated desire to exercise control over the fleeting self that she does project (“it’s time to take a break and come back as the real me”). The irony in question comes therefore in her endeavouring to use YouTube, this space from which she so pointedly explores narrative fluidities, as a means of retreating to fixity.

In the end, what AnonyGirl1’s story perhaps most incisively points us toward is the necessity of thinking about how it is that these opposing notions (fluidity and fixity) might exist together in her conception of herself as expressed on YouTube. In this sense, even if at times constructing herself by clinging to notions of fixity (“it’s time to come back as the real me”), the broader scope of her contribution more often reveals her delight in negotiating the new possibilities of making and unmaking herself that her online participation affords her (“I’m so excited to start fresh”). And this perhaps contains the essence of a more expansive lesson that AnonyGirl1 shares in her exposition. Namely, that making oneself on YouTube and on online spaces like it is premised on a promise that is at once full of choices and possibilities for actualising fluid and flexible narrative expressions of self, but that thorny issues can lurk in the shadows of these possibilities. AnonyGirl1 explores issues and concerns in relation to both of these premises on YouTube. In the process of doing so, she confronts the presumed coherences of youth narratives, defies narrative notions of temporal linearity, and offers us new ways of imagining the construction of one’s self. In this regard what AnonyGirl1’s leaves us with in her telling of her story of herself, is a different kind of articulation of adolescence than we might have had she expressed herself elsewhere, and thus otherwise. This articulation gives expression to how narrative forms premised on temporal linearity, which modern narratives of adolescence often exemplify (i.e. ages and stages), might co-exist with and perhaps even suppress what is really a more complicated process of subject making – one that resists the fictions of linearity in favour of the recursive processes of articulation and re-articulation that are increasingly reflective of many young people’s experiences of self and meaning-making.

Acknowledgement

This chapter emerges from the author’s doctoral dissertation, called Youth in the Time of YouTube. The author wishes to thank Dan Yon, Jen Gilbert , Warren Crichlow and Danielle Brown for their comments and suggestions.

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Appendix: List of AnonyGirl1 YouTube References[iii]

Biographical Statement

Roger Saul is an Assistant Professor in the Faculty of Education at Brock University. His research focuses on cultural studies and education, and spans areas such as youth cultures, digital cultures, cultural identities, and the sociocultural foundations of education. He teaches courses on technology in the curriculum, ethics, comparative and international education, reflective practice, and the intersections of culture, identity and pedagogy. His recent writing has appeared in the International Journal of Learning and Media, The Journal of Popular Culture, Educational Studies, and Canadian and International Education. He is co-editor of the book Education in North America (Educational Around the World) (Bloomsbury Press, 2014).


[i] Her reposting of these twenty videos also proved temporary, as she in time removed these videos as well, only to replace them with (and then remove) still other videos.

[ii] I retrieved the video on September 9, 2008. At that time, videos deemed “featured” were ones that YouTube site operators chose to showcase through prominent display on their website, display that often went a long way toward determining what videos among YouTube’s millions would actually be seen by broad audiences.

[iii] To note, in concert with AnonyGirl1’s practice of adding and deleting videos of herself on YouTube, the effects of which much of this paper explores, the videos listed in the Appendix are no longer posted on YouTube at the time of my writing this.

Eleanor Sandry

Published Online: April 30, 2014
Full Text: HTML, PDF (1.1 MB)

Abstract

This paper extends Emmanuel Levinas’ articulation of “the face to face” encounter (1969, p. 79-81) to suggest that students and teachers can be brought into an ethical proximity created by the media they share and discuss online in Facebook. In Levinas’ terms, a ‘face’ is not simply a physical face. Instead, the Levinasian face encapsulates all the ways that one person is able to reveal aspects of their personality to another. Interactions in Facebook remain “bounded by the impossibility of ever knowing the Other,” as does all communication according to Levinas (Zembylas and Vrasidas, 2005, p. 72). However, while a profile picture may or may not disclose much information about a person, the content posted and shared online (in the form of text, images, videos, likes, etc) reveals aspects of an individual’s personality in a way that encourages responses from others. Facebook can therefore bring people unable to meet in the same physical and temporal location into a proximity created by their online disclosure. In addition, the asymmetry between students and teachers, emphasised in spaces such as lecture theatres, is destabilised in Facebook to provide students and teachers the opportunity to learn from one another’s shared ideas, experiences and understandings.

Keywords

Asymmetry, Ethics, Face, Facebook, Learning, Levinas, Online

Introduction

Arguments about the possibilities of online learning and the effectiveness of platforms used for its provision can be related to the debates around the “deficit” or “surplus” appraisals of online communication in comparison with face-to-face communication, as well as considerations of the relative merits of online and face-to-face communities as supporting “thin” or “thick” engagement between members (Johnson, 2010; Introna & Brigham, 2007). Underlying both sides of these debates is a polarised view, which absolutely separates the possibilities of online from offline communication. The boundary line between the two has most often been drawn in relation to the presence or absence of human facial and bodily expressions, and more recently (now that emoticons, avatars, images and video are more widely used) the presence or absence of the opportunity to interact with someone in the flesh by encountering them in the same physical space (Johnson, 2010). Some scholars privilege the richness of face-to-face interaction over online communication, noting the latter’s deficit of non-verbal and emotional cues, whereas others argue that the flexibility of online communication, where first impressions can be separated from one’s physical appearance, offer people a surplus of ways to alter the impression they make to fit a particular context as they wish (Johnson, 2010). Following on from this is the argument over whether the lack of physical closeness online can lead only to weak, or thin, community contact being made, or whether the flexibility of online communication promotes complex, or thick, community relations (Introna & Brigham, 2007).

As opposed to reworking these debates, this paper considers what happens when one ceases to privilege the presence or absence of a physical human face to support meaningful communication. Instead, it introduces a broader understanding of what can be meant by the term ‘face,’ by extending the phenomenological and ethical philosophy of Emmanuel Levinas. Levinas’ conception of the face was drawn out of his examination of human encounters in the same physical space. However, his description of the self-other encounter as “the face to face,” stresses that the face of the other is not simply a set of physical features that can be seen, but rather the means by which the other reveals themselves to the self (1969, p. 79-81). This conception of face as a means of revealing otherness suggests that is it possible to extend Levinas’ description of the ethical self-other encounter into online spaces. Therefore, although it is certainly not something that Levinas’ himself would have done, this paper employs the idea of the Levinasian face in support of new ways to frame the potential of interactions in Facebook as part of higher education learning programs.

Facebook and online communication

Online platforms have extended the idea of computer-mediated communication (CMC) beyond the confines of text. They have radically increased the ease of communicating with other people, both individually and as a group, using a combination of text, audio, still images and videos across spatial and temporal divisions. The sharing of these different media forms adds to the richness of online communication in ways that support many possibilities for disseminating information, indicating emotional reactions and revealing aspects of personality, personal history and experiential knowledge. Although this is true of a number of online communication platforms, in terms of current popularity and number of users, “Facebook has no effective imitators” other than a few specific services such as “Weibo in China and VK in Russia” designed to cater for particular differences in language, politics and culture (Allen, 2012, p. 214). The use of Facebook to keep in contact with ‘friends’ (who may fall into a number of categories such as acquaintances or work colleagues) is now a feature of many people’s everyday lives. Facebook is primarily thought of as a space for maintaining social connections with others, but different people take this to mean different things, whether sharing aspects of their everyday life experience, publicising the causes in which they feel most heavily invested, or sharing interesting or amusing things they have seen on the Internet.

Most educators and students are insistent that their personal Facebook networks should be carefully separated, since neither group really wants the other to see everything that is posted to their Facebook timelines. In addition, it has been suggested that some educators might be uncomfortable with the Facebook environment, because it reduces the hierarchical separation between teacher and learner that is familiar from the lecture theater environment (Allen, 2012). Nonetheless, the popularity of Facebook and the regularity with which it is checked by its users suggests that this Social Network Site (SNS) might be a good way of making and maintaining contact between students and teachers, to share information through a platform that is becoming increasingly familiar, and is considerably more flexible than institutional email systems or commonly used institutional Learning Management Systems (LMSs), such as Blackboard or Moodle.

Facebook friend networks and Facebook groups in education

Facebook’s popularity with both students and teachers in higher education is not primarily driven by the use of this SNS as an educational environment; instead, it is more commonly understood as a way of maintaining a personal network of family, friends and acquaintances. Whether the people in this network are family members, or met through school, college or university, through work, or socially, the majority of them are also known offline. Indeed, boyd and Ellison note, “[w]hat makes social network sites unique is not that they allow individuals to meet strangers, but rather that they enable users to articulate and make visible their social networks” (2007). This general observation carries through to the specifics of “education-related interaction,” where Facebook is again used “primarily for maintaining strong links between people already in relatively tight-knit, emotionally close offline relationships, rather than creating new points of contact” (Selwyn, 2009, p. 170). The interactions between Facebook friends, including those in an educational context, are therefore often subject to face-to-face rules that have already been defined in various specific offline contexts. However, the granularity of interaction possible in Facebook will be dependent on whether people in one’s Facebook network have been placed in specific lists (eg ‘Close Friends,’ ‘Acquaintance,’ etc) appropriate to the context from which they are known and the closeness of the relationship, or whether they remain categorised under the general heading ‘Friends.’

Although boyd and Ellison’s contention that the most important aspect of SNSs is to make one’s offline social networks visible is well supported, networks such as Facebook do nonetheless enable online interactions between people who may remain strangers offline. This is particularly the case when people become members of Facebook groups, which can be understood as networks that define specific communities of users. Importantly, these group networks are able to cut across users’ friendship networks, as opposed to existing only within them. Group networks therefore enable interactions between strangers, brought together only by their membership of the group. In addition, posts (including comments and likes) within a closed group are shared only with other members of that group, and are not shared across member’s friend networks through the newsfeed. Interactions between people in closed groups are likely, therefore, to be subject to different social rules from those between Facebook friends. Within a closed group people may choose to reveal, through their posts to the group wall, different aspects of their personality from those which they choose to share more generally with their Facebook friend network.

Neil Selwyn notes that in public wall posts “online exchanges” were “merely a continuation of how students talk to each other in other contexts” (2009, p. 172). Therefore, students tended to portray the role of either “the passive, disengaged student” or alternatively “the angry, critical student,” and students taking the opportunity “to present a self-image of being more intellectually engaged or enthused by one’s subject were noticeable by their absence” (2009, p. 172). John Suler suggests that “[t]he self does not exist separate from the environment in which that self is expressed,” and therefore “[d]ifferent modalities of online communication (e.g., e-mail, chat, video) and different environments (e.g., social, vocational, fantasy) may facilitate diverse expressions of self” (2004, p. 325). Importantly, none of these expressions “is necessarily more true than another” (Suler, 2004, p. 325). It is therefore quite possible that within a closed Facebook group, centered on a particular academic unit or subject area, students might be more willing to appear openly interested in their studies, while maintaining more of a disengaged or critical perspective in posts designed for their Facebook friends.

A Facebook group provides a visible network of people involved with a course or unit that have decided to join the group. It therefore acts as a collection point for students, with the potential for supporting a community of learners in a particular subject area. This community can be easily visualised, because Facebook keeps a record of the group’s members and identifies them by their names and profile pictures for all other members of the group to see. In some cases, students may use a pseudonym, and/or profile picture that hides their offline identity, but in general Facebook promotes the idea of appearing as oneself. Depending on the privacy settings each individual has applied to their Facebook profile, other information from these profiles that is made publicly available will also be available to group members by clicking through from the person’s name and profile image. Although some people who meet through a group may decide to ‘friend’ one another on Facebook, it is also possible that many will not, and they will therefore effectively remain strangers to one another, brought together only by their enrolment in a particular unit or course of education. This raises the question of how well these loosely connected groups operate as communities, and also how best to understand the learning that might take place within them.

Education and the value of critical and ethical communities

In “Reconsidering community and the stranger” (2007), Lucas Introna and Martin Brigham note that the formation of strong communities is most often assumed to depend upon physical closeness and/or the acceptance or development of “a particular shared value,” such that a “community can only exist through the inculcation and assimilation of others into the dominant concerns of the group” (p. 167). Central to this conception of community is the idea that human communication acts as a bridge between individuals, whether by enabling the accurate transmission or exchange of information, supporting persuasive influence over others, creating shared understandings of the world or promoting group agreement via critical rational debate. However, some communications scholars, such as John Durham Peters (1999) and Amit Pinchevski (2005), argue that accepting this idea results in a level of ‘violence’ to the other. As Pinchevski explains, “[t]raditional communication theories are largely about the reduction of difference or the transcendence of difference, and consequently, the elimination of difference” (2005, p. 65).

Although without such a clear focus on ‘violence’ to the other, similar concerns are presented in Introna and Brigham’s paper, as demonstrated by their use of the words “inculcation and assimilation,” and later “incorporation and coercion,” to describe the basis for most popular views of community (2007, p. 167). As an alternative, they suggest the value of seeing “community as critical and ethical involvement,” an idea that seems particularly relevant in an educational context where critical engagement and ethics are valued in both teaching and research (2007, p. 167). Introna and Brigham explore this possibility by drawing on Levinas’ philosophy of the ethical encounter between self and other, a philosophy that also forms the basis for Pinchevski’s exploration of ethical communication.

In contrast with theory that regards communication as a bridge, and communities as developing around shared values, a phenomenological perspective describes interactions between people more openly as opportunities to encounter others and their differences (Craig, 1999). Levinas, for example, describes the self as meeting the other in what he terms “the face to face,” an encounter which brings them into ‘proximity,’ but also retains a clear sense of the irreducible ‘distance’ between them (1969, p. 79-81). For Levinas, the terms proximity and distance do not describe how close interlocutors are to each other in physical space. Instead, the idea of proximity identifies any situation allowing the other to reveal a ‘face’ to the self, while the retention of distance is a reminder that the self can never completely comprehend the other. The Levinasian face to face, is therefore an encounter during which it is possible for the self to meet, and potentially to communicate with, the other, while continuing to acknowledge their absolute alterity. As Roger Silverstone notes, “Levinas’ notion of proximity preserves the separation of myself and the other” to ensure the presence of “both respect and responsibility for the other” (2003, p. 475). It is therefore possible for online interactions to enable proximity, by supporting communication in spite of physical separation. Indeed, since online technology enables asynchronous communication, it can also be regarded as a way to overcome temporal separation, such as that introduced by living in different time zones.

The importance of balancing proximity and distance, such that one can communicate while always respecting the other’s difference, is encapsulated in Silverstone’s term “proper distance,” where “proper” is used to mean “distinctive, correct, and ethically or socially appropriate” (2003, p. 470). The conception of ethical communication and the maintenance of a proper distance between self and other is central to Introna and Brigham’s “notion of community that is based on the ethical proximity of the stranger, the otherness of the other” as opposed to a reliance on “shared values, or shared concerns” (2007, p. 166). It is also relevant to Sharon Todd’s exploration of “how ethics and education might be rethought together as a relation across difference” (2003, p. 2). As she explains, “[t]he idea that we only need to get to know someone in order to be able to act responsibly (and responsively) toward that person” is easy to accept without question, and this viewpoint is often seen in the emphasis educators place upon “getting to know students through their experiences, cultural backgrounds, etc.” (2003, p. 8). However, assuming that one must learn about the other in this way in order to respond to them suggests that “otherness can be understood and that learning about others is pedagogically and ethically desirable” (Todd, 2003, p. 8). If, instead of seeing the other as defined by social and cultural differences, the other is regarded from the philosophical perspective as fundamentally other in an ontological sense, this undermines the assumption “that knowing leads to better ethical reflection, and that de-‘Othering’ is a worthy moral aspiration” (Todd, 2003, p. 9). As “the idea that learning about others is an appropriate ethical response to difference” is set aside, “the question that begins to emerge is how we learn from the other” (Todd, 2003, p. 9, my emphasis). In terms of Facebook and education, it is therefore valuable to explore how the other can reveal a Levinasian face online, to support the critical and ethical involvement within a Facebook group acting as a community within which teachers and students can learn from one another.

Revealing Levinasian ‘faces’ online

Central to Levinas’ conception of the ethical encounter is the other’s ability to reveal their face, an action that, as I have already discussed, can seem difficult to achieve in online environments. Indeed, as Laurie Johnson notes, the perceived lack of faces online is used as the basis for arguing that face-to-face and CMC are “inherently different” from each other, leading to “[t]he possibility of an ethical encounter in CMC” being totally denied (2010). Levinas himself concentrated on discussing encounters between selves and others in the same physical space, and was reported to be uneasy even while conversing on the telephone, constantly worried that he had been cut off (Derrida, 2013, p. 321). This suggests that he would be unlikely to have considered online communication as able to draw self and other into the proximity of his conception of a face to face encounter with any great success.

However, the use of computer interfaces has, for a number of years, made still images of faces readily available and, more recently, the sharing of videos and also live videoconferencing has become a familiar part of some workplaces and homes. Questions may be raised over whether the online presentation of faces on screens can provoke as strong a response for a viewer as may be felt in a face-to-face meeting. For example, Introna shares his personal experience of finding it easier to ignore someone when their face was mediated by an intercom screen, as opposed to being encountered directly at the open front door (2001). Johnson also acknowledges that online images cannot “simply reproduce a face-to-face relation in the immediacy of what we would consider a full presence” (2007, p. 53). It is therefore important to note that, although Levinas’ philosophy is embedded in his consideration of the physical encounter between self and other, the term ‘face’ in his writing does not simply refer to a physical human face. Indeed, he contends that rather than turning “towards the Other as toward an object” by concentrating on physical facial features, “[t]he best way of encountering the other is not even to notice the colour of his eyes” (Levinas, 1985, p. 85-86). Levinas also clarifies that “the whole body—a hand or curve of the shoulder—can express as the face” (1969, p. 262). During physical meetings, and to some extent a videoconference, the other’s expression might for example include head, hand and overall body movement. Furthermore, as Johnson highlights, at times Levinas seems to suggest that “the face could potentially be anything that conveys an expression” (2007, p. 52). The Levinasian face can therefore be understood as something more transcendent than physical, which encapsulates all the various ways that the other can reveal aspects of their personality to the self.

Taking this broad conception of face into consideration supports a deeper exploration of the possibilities of revelation online in social network environments. The pertinent question is not whether online others reveal physical faces through images or videos with the same immediacy and presence as they do offline, but rather whether online communication allows them to reveal a Levinasian face. Is it possible for the other to express and reveal their specific differences online, such that they can command the attention of their Facebook friends or those with whom they connect through Facebook groups? Richard Cohen argues that “the ethical dimension of human proximity transpires across the communications made possible by computers, just as human proximity takes place across phone calls, letters, artifacts. The ‘face’ can be a letter. The ‘face’ can be an email message” (2000, p. 34). Introna and Brigham also contend that ethical proximity can be reached both through the television screen, and via online messages and emails (2007, p. 175). It therefore seems reasonable to suggest that a Levinasian face can be revealed on platforms such as Facebook, possibly even more strongly than via emails and messages, through the act of posting, commenting on and ‘liking’ a variety of media for others to see.

Levinasian faces in Facebook

While a profile picture may, or may not, disclose much information about someone, posting and sharing content (in the form of text, images, music, videos, comments, likes, etc) online, and responding through further posts, comments and likes, has the potential to reveal many aspects of an individual’s personality. As Matthew Allen notes, “[f]undamentally, Facebook is a system for communicating to others the interests, passions, pleasures and business of the individual, ‘showing off’ the self” (2012, p. 216). Facebook “gives users a way of offering themselves to others, to gain attention,” and this broad understanding of personal disclosure through sharing content suggests the potential of revealing a Levinasian face online, since it is through personal disclosure that the other calls for an ethical response from the self (2012, p. 217). Although Allen goes further to suggest that people can be “understood” through what they share on Facebook, adopting a Levinasian perspective leads me to insist that what is revealed through Facebook can only support a partial understanding (2012, p. 217). In addition, while the system facilitates an “easy reciprocity in the giving of attention,” most notably through the ability to ‘Like’ a post or comment, there is nonetheless always a choice over whether to reciprocate on Facebook (2012, p. 217). Ideas of partial connection and comprehension, alongside the potential for communication that is not reciprocated, may offer a more pragmatic understanding of what occurs in Facebook groups made up in most cases of loosely connected people that may remain more clearly categorised as ‘strangers’ to one another as opposed to ever reaching the status of Facebook ‘friends’.

Facebook works well as an online environment to support meaningful encounters between people because of the relative ease of sharing and viewing rich media through its interface in comparison with, for example, Blackboard discussion boards. Most users are now very familiar with the technological aspects of Facebook, such that the underlying technology has become less and less noticeable. This is true not only of Facebook’s web interface, but also the smartphone and tablet apps for the platform. The majority of users find all of these interfaces so familiar and easy to use that sharing resources is a simple task, from the perspective of the person posting and also of the reader/viewer. As Clay Shirky notes, “[c]ommunication tools don’t get socially interesting until they get technically boring” (2008, p. 105). Facebook groups can therefore be favorably compared with the less sophisticated discussion board and bulletin board interfaces that are commonly found in institutional LMS environments such as Blackboard. In Facebook, the sharing of words, images, videos and other information takes place in an environment where people are more able to concentrate on the content itself, and the potential meanings it conveys, as opposed to the technical difficulties of sharing or viewing content. It is easy to reply with a ‘Like,’ a comment, or even a relevant rich media response of one’s own, and such sharing is made flexible, ‘anyplace, anytime,’ through the use of mobile devices. By allowing people to focus on the content shared through the links between people, as opposed to the network as a technology, Facebook is therefore more likely to support the revelation of a Levinasian face than the more technically challenging LMS interfaces.

From this perspective, “[t]he principal feature of Facebook, therefore, is not within the system so to speak, nor even determined by its use: the principal feature is each user and how they come to be known” through the content that they post (Allen, 2012, p. 216). Facebook can be understood to draw together the idea of the network technology and the human subjects interacting through that network so closely that the human “entanglement with media on a sociocultural and biological level” suggests that “media cannot be fully externalized from subjects” (Kember & Zylinksa, 2012, p. 1). This reinforces the idea that it is the on-going interactions that are recorded, through what is shared, liked and the comments made, that are more important than the underlying structure of connections between users (whether they are ‘friends,’ or members of the same group). Indeed, the underlying membership structure of a Facebook group can be quickly forgotten, along with the people that withdraw from the group completely or lurk and only read and view content; instead, the group becomes more clearly identified with those who are the most active, who post, like and comment on a regular basis. These active group members are identifiable not only from their Facebook profile images, but also by the tone of their comments, and the details of the multimedia content that they share. These are the people whose interactions with the group most clearly demonstrate the revelation of a Levinasian face—a face that is not physical, but rather a revelation of being—online.

Taking responsibility for learning and sharing personal perspectives

From early analysis of closed Facebook groups used in 2013 for two separate iterations of a Web Media unit at Curtin University, it can be seen that a number of students not only comment on material posted by the lecturer, but also ask questions and share their own source materials and examples through the Facebook groups. Although this shared content is light-hearted at times, it is also sometimes serious, for example legal or policy-related material, and is always relevant to the concerns of the unit as a whole. In a more structured situation, Murat Kayri and Öslem Çakir describe how the introduction of a Facebook group enabled learning to be “shaped by the students,” such that they even developed their own “lesson materials” (2010, p. 56). A closed Facebook group is therefore of practical use, because it offers a “coherent space for collective interaction” related to a specific context that can remain separate from “the individuated behaviour” more generally presented through a profile, timeline and information shared on the newsfeed with friends (Allen, 2012, p. 215). In spite of this separation, it is important to stress that students may feel more comfortable sharing their personal ideas and opinions in a Facebook group than in, for example, Blackboard, because Facebook is perceived as a less formal space than a traditional LMS. Indeed, by sharing their own experiences in relation to various platforms and media in the unit’s Facebook group, Curtin Web Media students were better able to grasp the implications of differences in access to media between city dwellers and those living in small country towns.

Sharing, in the context of a closed Facebook group, allows individual students to explore aspects of themselves and others in relation to the group’s subject matter. They are able to post what they are most interested in, and see how this compares with the thoughts of others. Since the people brought together in a Facebook group are not necessarily Facebook friends there is an increased likelihood that the unfamiliar experience and history of others in the group may highlight very different perspectives about the course or unit content. As people share views, opinions and examples that particularly appeal to them, their interactions with the group are also likely to help them situate their existing knowledge and experience in relation to what they are learning. As Sarah Kember and Joanna Zylinska suggest, people and the media that they share, comment upon and like in Facebook are co-constituted (2012, p.164). This perspective highlights not only that people reveal themselves through what they post on Facebook, but also that their self-understanding may change as a result of reading the posts of others. Through the more personal nature of posts in the Facebook group, as opposed to an LMS, students are drawn into proximity. They have an increased opportunity to encounter the other’s ideas and experiences in ways that resonate with Levinas’ conception of “the face to face” (1969, p. 79-81). Although an LMS discussion board may have the capability to foster this level of response, if presented and managed by teachers as somewhere that welcomes personal as well as more formal reading and research-related posts, the lack of ease and immediacy of posting is likely to reduce the dynamic nature of the revelation-response interaction. In addition, the LMS is often perceived as a space in which a teacher-student hierarchy is clearly maintained, and sometimes even reinforced when the system overtly marks teachers’ posts as from controllers, coordinators or lecturers.

Asymmetry and sharing in Facebook

There is often a clear asymmetry between students and teachers; one that is emphasised in spaces such as lecture theatres, and, as I have just mentioned, also in LMSs. As Suler notes, “[a]uthority figures express their status and power in their dress, body language, and in the trappings of their environmental settings” (2004, p. 324). This is true of the lecturer who may choose to dress more smartly when presenting, and is often required to take centre stage because of the physical arrangement of the lecture theatre as a space. However, this display of authority can be lessened in tutorial rooms, where a careful choice of seating layout, use of less formal language, and taking time to ensure inclusivity can be used to break down the asymmetry somewhat. It has been argued that online environments can reduce the perception of authority and thus the feeling of asymmetry, making an interaction feel “more like a peer relationship” (Suler, 2004, p. 324). Although the identity of the lecturer or tutor is often known in Facebook, it is not so overtly stated as in an LMS. In addition, the teacher’s authority can be further reduced by embracing less formal language, the choice of what is shared and how, and the use of likes and comments to encourage greater student participation.

As I have discussed, in Facebook all parties are able to share their thoughts, experiences and examples relating to a subject in a flexible and, to many people, familiar environment. In this online space, the asymmetry between communicators has the potential to be more fluid, changing as different perspectives and ideas are shared within student groups, and between teachers and students. There is a complex asymmetrical relation to be played out online, but it is worth remembering that this is also present (in a different form) in the offline tutorial space. Teachers take responsibility for acting as mediators, facilitators, occasional arbitrators and also providers of information about the ‘official’ content (terminology used, theory explored) and/or the organisation of the unit (ie when assignments are due, what style of referencing to use etc). However, they are also responsible for encouraging students to feel comfortable in making contributions. There is great potential in using both tutorial rooms and Facebook groups as places where teachers can take a less formal and more personal approach, revealing aspects of their personalities by sharing their thoughts and experiences of the subject at hand, as opposed to reiterating the unit material. By encouraging this level of interaction the emphasis moves towards developing a critical and ethical involvement with other people, and creating a community within which teachers and students are able to learn from one another.

Conclusion

An ethical stance to online communication would seem to be particularly important in educational contexts. For this reason, I have tried to draw together ideas about ethical communication, ethical and critical communities and education as learning from the other in this paper. This has been done by exploring the possibility of taking Levinas’ conception of the face to face encounter into an online setting. However, as Johnson notes, any argument that a face can be revealed in online communication is not in itself sufficient to guarantee an ethical encounter in systems such as Facebook (2010). In spite of this, the theory discussed in this paper does support the potential for ethical, critical and educational encounters to occur online, with the particular example explored being the possibilities of a Facebook group. Of course, the success of any Facebook group, as is the case for a face-to-face lecture, seminar or tutorial, will depend on the participants and the particular group dynamic that develops.

Although I have concentrated on discussing a number of potential benefits of using Facebook in education, it is important to note that the institution, teachers and students have no real control over how this system might work in the future. While the Facebook group is seen to have great potential to support contained communication about a unit in its present form, in its next iteration posts, even from closed groups, might be shared on people’s overarching timelines (and thus with all of their friends). The decision to broaden access to posted information has been a feature in the past as Facebook has developed, and this trend may well continue. After all, the platform is not designed as a space for education, it is a business that collects and markets peoples’ information in exchange for providing them with a means to communicate and share online. Even in its present form, not all students perceive even closed Facebook groups as safe environments. Some still worry that “their academic performance … could be discovered by their social friends” or that “their personal information and social lives might be accessed by the tutor” (Wang et al, p. 436). In addition, while Facebook is currently the most widely used and familiar SNS, it is possible that this will change. Allying education with a particular piece of commercial software, at least in part on the basis of its popularity, means that if it is superseded there will be considerable pressure to move to whatever new platform comes along. This may or may not introduce new possibilities and/or problems for teachers and students.

Many people now have Facebook accounts and use this SNS on a regular basis, but in spite of its popularity it should not be assumed that all students use the system. In my experience, even as recently as 2013, there are always a few students that have never used Facebook and some of these people will not want to sign up. Occasionally there will also be students who used Facebook in the past, have left the SNS and are strongly opposed to rejoining. Indeed, even some regular Facebook users may not want to use what they regard as a site for social interactions as an educational space. The implication of this is that material shared and discussed in Facebook should be additional to the core course content, or that it should be shared with all students on the institution’s LMS or elsewhere, to include those students not on Facebook. This introduces a further issue for some students, who then feel under pressure to check in Facebook, the LMS and any other site being used to support information sharing and discussion, resulting in the complaint that there are too many demands on their attention.

In spite of these provisos, thinking about online education and communities in Facebook groups from a Levinasian perspective emphasises the importance of both teachers and students taking responsibility for each other and for learning. At its heart, the face to face is about paying respectful attention to others, and it therefore supports the idea of learning from the other, as opposed to either learning about the other or simply instructing the other. Levinas stresses the need to embrace ethical communication as non-reciprocal, (i.e. one makes the decision to communicate without the expectation of a response, an idea that is particularly suited to considerations of online communication where responses can be elusive). In addition, his description of the face to face encounter acknowledges the existence of an asymmetry between interlocutors, and can be extended to allow this asymmetry to be fluid and changing depending on the specific context. A conception of communication and relation drawn from Levinas provides a way of explaining what is happening when online interactions work so that a partial connection is made between people, or an unexpected post highlights a new piece of valuable information or previously unconsidered perspective. Of key importance, supporting this connection and learning, is the idea that teachers and learners not only share information, but also share aspects of their own personal perspectives on the material. They are thus able to reveal Levinasian faces, with SNSs such as Facebook tending to emphasise the personal by encouraging less formal posts more strongly than is commonly seen in interactions through LMSs such as Blackboard. In addition, embracing the idea that the asymmetry in the relation between teachers and learners can oscillate depending on the direction an online discussion takes, offers the potential for anyone in the group to learn from anyone else, whether students from other students, students from teachers or teachers from students.

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Lucinda Rush & D.E. Wittcower

Published Online: April 30, 2014
Full Text: HTML, PDF (757 KB)

Abstract

The idea of the digital native was based on abstraction; when we look in detail at the digital activities of high-school and college students, we see deskilling and consumer training rather than information literacy or technical fluency. Yet that training is still training, and may be adaptable in such a way that it can become a literacy—in, for example, the way militaries have mobilised skill-sets produced through gaming. We too can and should mine the narrow and profit-driven consumer training that emerging adults have undergone for kinds of inquiry and critical engagement for which they may have inadvertently been given tools and training. In this article, we will analyse the structures of Facebook to see what sorts of consumer training it produces, and suggest avenues for the educational expropriation of that training. First, we take an inventory of categories of consumer training, analysing each and identifying exploitable elements within each. Following this, we suggest activities and assessment structures exapting these literacies and habits to educational ends. Many of these structures involve direct employment of Facebook in coursework, but others identify assignments, projects, and approaches which draw upon SNS consumer training but do not themselves employ Facebook.

Keywords

Facebook, instructional design, phenomenology, consumer training, pedagogy

The myth of digital nativity

The term digital native was first coined by Marc Prensky in a 2001 edition of On the Horizon. He defined digital natives as people who have spent their lives engaged in technologies such as computers, video games, the internet, and mobile phones. Their exact birth year varies among scholars, but in general these are kids who were born after 1980. In 2001, Prensky pointed out research that indicates that as a result of this lifelong immersion in technology, the brain structure and thinking patterns of digital natives is quite different from the digital immigrants (those born prior to the technology explosion). In 2009 edition of Innovate, Prensky readdressed his 2001 publication, suggesting that as we progress further into the 21st century, the line between digital natives and digital immigrants becomes more blurred, and that we should focus our attention on what he labels as digital wisdom. “Digital wisdom is a twofold concept, referring both to wisdom arising from the use of digital technology to access cognitive power beyond our innate capacity and to wisdom in the prudent use of technology to enhance our capabilities” (Prensky, 2009, p. 1).

Since the Prensky (2001) article, there have been a great many discussions and debates surrounding the idea of the digital native. Digital natives cannot be determined by their birth year alone. Children born in developing countries, where even electricity is scarce cannot be considered digital natives. But even in wealthy countries, where children have access to technologies, there is a divide between those who use them effectively and those who do not (Palfrey & Gasser, 2008). Hargittai (2010) pointed out that while 81.2% students whose parents are considered highly educated own personal laptops, only 55.1% of students whose parents have less than a high school education own a laptop, and that parental education also plays a role in the skill level of the student. Hargittai and Hinnant’s (2008) study tells us that college students who have daily access to the internet vary in knowledge based on their socioeconomic status, parental education, race, and gender.  University students come to us from all types of backgrounds, some are digitally literate, but many are not.

Even among those of the ‘digitally native generation’ who are digital natives, though, the idea that digital nativity would itself automatically imply digital literacy/fluency, information literacy/fluency, or digital wisdom, is based on too simplistic an understanding of the cognitive and behavioural environment to which “digital natives” are native. “The digital” is not a single thing, and the digital landscape is not uniform. Skills developed in one sort of digital environment or practice may not be more broadly applicable. Even the phrase “digital native” is, in this way, a kind of fallacious equivocation, implying transitivity of skills and understanding across radically disparate kinds of activity. The digital native’s familiarity with seeking out information on Google in no way implies her familiarity with search engine algorithms, metadata, or the assessment of online sources; the digital native’s relative comfort in maintaining personal relationships online does not translate into fluency in maintaining privacy on social networking sites (SNS).

Now, to be sure, there are some general truisms about life online that cut across a great swath of the everyday practices of digital natives, and these truisms can help us reform our pedagogy. We need to teach students the way that they can learn, not in the traditional ways that we and prior generations learned in the past. Generation Y emerging adults, or Millennials as they are often called, prefer fast, parallel learning. They are multi-taskers, and it is rare to find one who prefers working in silence. “Unlike most digital immigrants, digital natives live much of their lives online, without distinguishing between the online and offline” (Palfrey & Gasser, 2008, p. 4). They prefer to participate actively in their learning process. “Kids who have grown up digital expect to talk back, to have a conversation” (Tapscott, 2009, p. 126). Tapscott (2009) points out that in the United States today, we generally follow the Industrial Age mode of pedagogy, and this is not effective for Millennials who are used to fast paced environments and must be prepared to become lifelong learners. Universities have tried to keep up with new and changing technologies by doing things like giving all students a laptop, installing Smart Boards in every classroom, providing wireless internet access at every location, and making equipment like iPads, cameras, and e-readers available for students and faculty to borrow, although practices of effective use have sometimes lagged behind the availability of these resources.

Access to the internet has drastically changed the way that we find and use information. Digital natives are “grazers,” who do not sit and read the newspaper from cover to cover each day, but read bits of information from various sources throughout the day and night (Palfrey & Gasser, 2008). They interact with the information much more than digital immigrants, by participating in online discussions, blogs, posting on Facebook and Twitter. In 2008, Barack Obama employed Chris Hughes to organise his online presence. “Obama had by far the largest Internet presence of the candidates” (Tapscott, 2009, p. 252). The campaign changed the way that Millennials, who were described by Mark Bauerlein (2008) as “the dumbest generation,” participate in politics. It is quite possible that they are actually learning and engaging with information more than digital immigrants, when the information is presented to them in a way that is innate to them (Palfrey & Gasser, 2008).

This is all quite valuable. In addition to drawing on these most generic informational habits inculcated by life online, though, we can also take a more focused look at the specific environments to which “digital natives” are native, in order to see what specific literacies and fluencies have been developed and fine-tuned prior to their arrival in our classrooms. By doing so, we may be able to identify new cognitive ‘strong points’ to draw upon in our coursework.

Consumer training and Millennials

One barrier to proper appreciation of the meaning of digital nativity has been the focus on the importance of developing informational habits within a digital environment to the exclusion of recognition of the importance of developing informational habits within a market environment. In our online informational lives we represent constant sources of profit through advertising microtransactions, and online environments are often strongly determined by market forces. The fluencies developed among digital natives, then, are likely to be those that best support the profitability of the private interests at work in the digital environments to which they are native. We might call this “consumer training,” since it’s a purposeful development of habits of use which maximise the value of the user qua consumer to the corporation that owns the informational environment in question. We expect, then, that digital natives will be fluent in sharing and building relationships, but not as fluent in navigating privacy settings; that they will be very capable of finding appealing information for a given Google search, but not that they should be well aware of or comfortable considering how Google determines which results to display, distinguishing between ‘sponsored results’ (ads) and other results, or thinking through other informational distortions like Google bombing, spamdexing, and filter bubbles.

Consumer training is further supported by processes of deskilling that introduce dependency on profit-based informational environments. Just as the presence of spell-checking in our word-processors has presumably led to underdevelopment of spelling skills in digital natives (and perhaps a slow atrophy among digital immigrants as well), so too does trust in Google presumably lead to underdevelopment of informational assessment skills. We see, for example, that when users are asked to answer questions using a Google search, they are much more likely to use the first couple of hits rather than later results—and that users continue to favor those first hits even when they are presented with a ‘doctored’ set of results, in which the top ten search results are given in inverted order (Bing et al., 2007). It is hard to say, of course, how much we are losing our ability to critically and independently assess sources for the relevance and value of their information—but it is easy to say that, in practice, we are at a minimum simply choosing not to do so, and placing trust in Google’s algorithm to do so on our behalf.

Worse yet, users who have been in this way deskilled view themselves as highly capable. According to Barefoot (2006), very few students entering college are able to distinguish between fact and fiction information that is available online, despite having grown up surrounded by technology. While students are used to using Google and other web search tools, Brey-Casiano (2006) points out that much of the information that is found is misleading or wrong.  The Educational Testing Service (ETS) created and conducted a test, the Information and Communication Technology (ICT) Literacy Assessment Core Level, to analyse college and high school students’ information literacy skills (Foster, 2006).  The test measures the ability to “retrieve, analyze, and communicate information available online” (Foster, 2006, p. 36). Of the 3,000 college students and 800 high school students that took the test presented in Foster’s (2006) study, 13 percent were considered to be information literate. ETS found that when searching a database, half of students were able to weed out invalid results, and that in regards to web sites, students were not successful at identifying web sites that contained biased information. ETS concluded that “many students were unprepared for college work” (Foster, 2007, p. 40). Many students feel that they adequately understand how to find and analyse information on the internet, while librarians feel that they are lacking in these skills (Antell & Huang, 2008).

While the specific literacies or fluencies developed in our market-driven digital informational environments may be characterised more so by consumer training and deskilling than by substantial understanding and information independence, these are still habits, behaviours, and skills that we may be able to draw upon as educators. Corporations have made digital natives native to their consumerist environments by appropriating users’ personal and informational desires, turning them to support profits along with user needs and intentions. We can expropriate that appropriation—we can seize upon the skills developed in users for the sake of profit and turn them instead towards education. To see how this might be accomplished, let’s consider a case study that will illustrate and motivate the project of this kind of educational expropriation.

A motivating case study: military expropriation of consumer training

Militaries have been engaged in expropriation of consumer training obtained in video games for many years now. While it is military use of content-based consumer training that is probably best known, the lesser-known use of hardware- and interface-based consumer training is both less problematic and more useful to us, as educators, in thinking about ways in which we might similarly adopt a programme of expropriation of student consumer training.

By way of contrast and background, it is worth providing a snapshot of military expropriation of content-based consumer training. What may come immediately to mind is the FPS (first-person shooter), which from its inception has had a strong military theme as a genre—for example, Wolfenstein 3D, in which the player guns down Nazi soldiers in an attempted prison escape and faces a “final boss” of a cyborg Adolf Hitler. More recent examples include the Doom series, the Medal of Honor series, the Quake series, the Halo series, and the Call of Duty series, among a great many others.

While these may be the most prominent example of consumer-training through entertainment that might be adaptable to military action, militaries have appropriately recognised that the consumer-training provided through these games provides a very poor basis for expropriation, training consumers in the ecstatic glee of universal and heedless violence. While some games do require some amount of diplomacy, discrimination between combatants and non-coms, stealth, and scrupulous care to escape injury, for the most part FPSs emphasise shooting everything that moves, and utilise game-mechanics of multiple lives, restarts from save points, virtual bodies that can survive unimaginable violence, and magically health-restorative items. For these reasons and others, militaries have sought to create their own games, whose content and mechanics might better serve as the basis for expropriatable consumer-training. In the U.S. context, most prominent of these are the America’s Army series, developed by the United States Army and released in Xbox, arcade, and mobile versions—but even these games have been subject to widespread criticism from outside and from inside of the military (Anderson and Kurti, 2009; Schulzke, 2013).

Militaries continue to explore content-based forms of consumer training that may be expropriatable—for example, a recent solicitation of proposals to develop games that will “portray the political, military, economic, social, informational and infrastructural conditions” (Beidel, 2011, p. 36), or DARPA’s (Defense Advanced Research Projects Agency) GFTs (Games for Training), in which “more often than not, [the solution is] don’t shoot, talk instead” (Chatham, 2007, p. 37). There is reason to believe that constraining user choices in such a way to require and incentivise desirable behaviour, even if completely successful—a seemingly impossible ideal—would still result in consumer training difficult to appropriately utilise. Frank (2012) points out that a basic problem is what he has called “gamer mode,” in which the gamer focuses on discovering the game mechanics at work in order to “game the game.”

Consumer training in hardware and interfaces seems much easier to unproblematically expropriate. Surely the familiarity we have with radar displays from film and gaming gives us a kind of literacy, making a green blip on a screen informative and transparent to those who have not undergone submarine training of any sort. Here, of course, it is the entertainment industries which have copied the military interface, but militaries are increasingly choosing to design their interfaces after the fashion of those developed by the entertainment industries, in order to take advantage of the literacies and ontologies in which consumers have already been trained. By focusing on literacies and haptic/kinetic skill sets—much more content-neutral forms of training, compared to those previously discussed—useful training can be expropriated and placed within new contexts in which they can be beneficially employed.

Defense contractor Raytheon, for example, used “the same technology that drives Halo and Splinter Cell” to develop its Universal Control System for UAVs (Unmanned Aerial Vehicles)—Mark Bigham of Raytheon is quoted as saying “Gaming companies have spent millions to develop user-friendly graphic interfaces, so why not put them to work on UAVs? . . . The video-game industry always will outspend the military on improving human-computer interaction” (Hambling, 2008). Unbranded or knock-off Xbox controllers (Hambling, 2008) have been observed in use by UK and US soldiers, to control UAVs and SUGVs (Small Unmanned Ground Vehicles) (Strauss, 2007; Brooks, 2012).

These skills and literacies do clearly translate. While, undertstandably, there is little information provided directly by the militaries employing this kind of expropriation of consumer training in interfaces, Mary Cummings, a former Navy fighter pilot and MIT professor of Aeronautics and Astronautics reports that “We have shown in two different studies that, with only three minutes of training, people can fly a UAV in a surveillance task and not crash” (Brooks, 2012).

We present these examples as a motivating case study. If the interfaces and ontologies of game system controllers and screen-displays can be effectively expropriated for military use, what forms of consumer training can we, as educators, look to similarly expropriate? In answering this question, we turn to consumer training on SNS, for several reasons. First, even if digital nativity is a myth, it is clear that there is a process of consumer training at work in our online lives. It is reasonable to ask not only how this training is a form of deskilling, but also how it is a form of literacy. Second, in asking what specific online spaces the so-called digital native is native to, the most prominent places, as numerous studies have shown (e.g. Weigley, 2013), are Facebook and Google properties (including YouTube). It seems to be common sense to turn first to these places. Third, while looking at the educational implications of consumer training on Google is clearly valuable, others have already begun this work (e.g. Colón-Aguirre and Fleming-May, 2012; Georgas, 2013; Leibiger, 2011; Sorensen & Dahl, 2008; Vaidhyanathan, 2011). Hence, it is appropriate and useful to turn to SNS, and Facebook most especially, for this study.

Elements of SNS consumer training

Facebook is the most commonly used social networking site, with over 900 million active users worldwide. 751 million Facebook users are using Facebook mobile products monthly (Facebook, 2013). According to a 2010 report published by the Pew Research Center’s Internet & American Life Project, 72% of American young adults, ages 18-29 are using social networking sites, and that number is rising (Lenhart et al., 2010). They are also more likely to use a laptop or mobile device than a desktop computer: 93% of this age group now has a mobile phone, and 55% go online via their phones (Lenhart, et al., 2010).

College students are familiar and comfortable with using Facebook in their every-day lives. While our purpose here is to identify ways that literacies developed on SNS can be used in pedagogy—uses which need not actually involve using SNS as a platform—one prominent way in which these literacies can be used is by using the SNS platform itself. Towner and Muñoz (2010) conducted a survey to examine the potential for using Facebook as a teaching tool. Sixty percent of students surveyed indicated that they access Facebook more often than their web courseware and 36% stated that Facebook was easier to use than their web courseware (Towner & Muñoz, 2010). While a little over half of the students indicated that Facebook should not be used for instructional purposes, 79% agreed that using Facebook in a class would allow students to learn from each other. This brings us back to the idea that Millennials are social learners, and that perhaps we can utilise Facebook in a way that will allow students to collaborate and learn from each other in an environment that is second nature to them. Towner and Muñoz (2010) also discovered that students are already using Facebook informally to help classmates and share information about classes.

To identify the elements of consumer training which may be expropriatable in SNS use, we must start with a phenomenology of SNS use. In order to identify the small-scale frameworks of thought and use which may be easily portable—as motivated by the success of military interface training expropriation relative to more content-based training expropriation—this will take the form of a microphenomenology or postphenomenological analysis in Ihde’s sense (as in e.g. 1976; 1990); more a “unit operations” approach rather than a system operations perspective, in Bogost’s (2006) sense.

A full phenomenology is far beyond the scope of this paper, but it seems to us that a preliminary phenomenology, sufficient for our purposes here, should begin from a set of categories of user training as follows, organised approximately from the more concrete to more abstract:

  1. Social informatics
  2. Interactions
  3. Audience construction
  4. Identities
  5. Incentives
  6. Ambient awareness

It can be expected that these terse headings are uninformative on their own; the phenomenological analysis of each in turn will, however, make clear what elements of experience are identified under each. We also must take care to note that the phenomenological analysis here, both in breaking down the user experience into these categories rather than others, and in the analysis of each category, is not aimed towards phenomenological completeness or even a well-rounded view of the user experience, but is aimed instead more narrowly towards those elements of user phenomenology which seem to us to be potentially educationally expropriatable.

Social informatics

Information on SNS is organised through an indiscriminate intermixing of posts from persons and corporate entities inhabiting a variety of social positions relative to the user. Posts by family, friends, and social media brand identities appear in an undifferentiated[1] feed, organised neither by content nor point of origin, resulting in a sometimes disorienting panoply of emotional, social, and informational relevancies (and irrelevancies).

The user experience of the feed, then, is of a different nature than, for example, scrolling through posts on a blog, online news site, or online magazine. In these cases, the user experiences ordering and selection of topics as intentional and reflective of some sort of more-or-less unified individual or corporate evaluative and valuational process. The question to the user in pursuing further details from this informatic structure is one of consumption: about what do I wish to know more? The informatic structure of the SNS feed is social—crowdsourced curation, so to speak, rather than reflective of editorial voice or some other unified set of criteria—and so the user sorts the information presented in terms not only of interest in content, but also in terms of social relevance. A post from a node with which we have little connection may be investigated based on content; conversely, a post whose content is of no otherwise significant interest may be pursued based on social connection with the node. Most of us do not care to watch videos of everyone’s children, and it is certainly not the case that we choose to watch those of e.g. our nieces because they are universally interesting or objectively impactful.

This results in a form of social informatics, in which information appears to the user in an undifferentiated amalgam of a variety of sources, and is filtered by the user for consumption based upon both content and internodal connection.

Interactions

Internodal interactions facilitated by SNS are both scalable and multiplex (Kapferer, 1969)—that is to say, users move smoothly between different kinds of interactions with differing levels of publicity and differing levels of content-richness. Interactions afforded by SNS may be directed towards nodes (sending gifts, messaging), towards posts (likes, comments), and towards networks (shares, posts, checking in)—and these affordances are frequently supplemented by interactions taking place outside of SNS, as for example in follow-up email contact or later face-to-face conversation. These interactions, then, take place along different spectrums: from least to most content-rich approximately as follows

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and from least to most intimate approximately as follows.

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These spectrums are neither parallel nor orthogonal to one another, but multiply intersecting and intertwined.

With scalability of interaction, there is formed a constant openness to expanding or contracting exposure and intimacy between nodes. Mutual exchange of likes can build a connection between weak ties (Granovetter, 1974) that scalable communicative affordances allow to seamlessly expand and deepen through more substantive interaction. Demands of self-performance along with others can also be de-escalated through this smooth scalability—the comment left unreplied-to, for example, quickly scrolls off our screens both literally and figuratively—as distinct from in-person communication, in which a comment demands an immediate and in-kind reply, the failure to do so resulting in an awkward silence which is itself information-rich and has an unavoidably significant although perhaps ambiguous relevance to current and ongoing interaction.

Multiplexity, similarly, allows users to manage interpersonal connections by engaging in communications with differential levels of social obligation. A post serves as a generalised invitation to all individuals within the user’s network to appoint themselves as among the intended recipients, providing a low bar to entry in conversation and no obligation to reply. An at-mention in a post provides both intimacy and obligation, perhaps even forcing users into interactions which they might otherwise avoid, in order not to appear rude in a semi-public sphere—a social circumstance having more the character of face-to-face communication in terms of obligation than even the private message or email.

Communicative affordances which appear in scalable and multiplex spectrums create a dynamic in which the degree and kind of relationship between nodes is constantly in play; in which expansion and contraction are constant options, and the degree to which one produces or accepts obligation to interact, and at what level of intimacy, are subject to constant negotiation.

Audience construction

Scalability and multiplexity train users in specific modes of negotiating and constructing internodal connections, but several of these communicative modes construct audiences rather than specific connections—most notably posting, sharing, and commenting. While posting and sharing are clearly public within the user’s specified network, it is nonetheless clear that many posts—perhaps all posts—are relevant to one or another aspect of the user’s identity, and thus have a “proper” audience of those members of the network whose connection with the user is mediated by that identity. The status update which speaks of the user’s love for his spouse on the occasion of their anniversary may be public to his network, and yet may appear overly intimate to many weak ties within that network—indeed, not only may this appear as oversharing to e.g. the former student, but should that former student choose to reply, this may appear to the poster himself as intrusive or inappropriate.

Audience, then, is constructed in two ways, and at two points: through code and through norms, and at the points of transmission and of receipt. At the point of transmission, we may choose to make something available to the public, to friends only, or to some specified collection of nodes—and yet such specification is rarely fully and purposefully arranged for a given communication, and the communicants held in mind in the communicator’s communicative act are surely nearly always fewer and more specific than those to whom the communication is made available. Sometimes, of course, this constitutes a kind of oversharing, but often it functions as an invitation to expand connections. When posting something political, for example, the user may have in mind her fellow activists, and yet her failure to exclude others from access to the communication can usually be more properly read as an invitation to her wider community to think about and become concerned with the issue.

This is transparent enough at the point of receipt. Users regularly exercise civil inattention (Goffman, 1971b) regarding communications which they feel norms dictate they are not the proper audience of, despite that the poster did not exclude them from receipt through code. The choice to respond is a construction of self as part of the proper audience, and the like or comment represents an assertion of a sort of internodal connection for which it would be within the range of social norms to be party to the conversation opened by the post or share. This construction may be unwelcome or inappropriate, as in cases like the coworker who chooses to respond to an in-group communication (“It was great to see my sisters X, Y, Z at the protest Saturday!”) by taking issue with the group’s politics, or the parent who forceably reminds his child of the slippage between intended and actual recipients by commenting on party pictures.

Through audience construction in code and in norms, as senders and as receivers, SNS users are trained in literacies of “environments that are both privately public and publicly private” (Papacharissi, 2010, p. 142), including the civil inattention demanded by in-group communications available to outsiders, and the construction of self as a proper member of the audience to a given communication through the like, comment, or share.

Identity

We have already addressed much of relevance to identity construction and performance in the preceding. Multiplex scalable interactions and the indiscriminate intermixing of our communications in the feeds of intended and unintended audiences within our SNS networks provide intense training in identity management. Presentation of self (Goffman, 1971a) must be engaged in on SNS with simultaneous relation to our multiple constitutive communities (Sandel, 1982). Users pursue various strategies of identity performance, ranging from a confrontational assertion of one aspect of self even among persons who may be uncomfortable with or uninterested in that self-aspect, to a meticulously curated lowest-common denominator self, carefully constructed to fit simultaneously into all constitutive communities. Rarely, though, do users choose these extremes—and yet more rarely do users choose them or any particular in-between on a permanent or even consistent basis. More often users modulate constantly between strategies, and display aspects of self in different ways at different moments to different constituencies, forming what has been helpfully described as akin to a burlesque fan-dance (Jurgenson & Rey, 2013), in which the play of revealing and concealing produces intimacy even in a semi-public communicative context. The constant shift between back- and front-stage self-performances (Goffman, 1971a) allows for different forms of inclusion and intimacy in relationships to take place in a private way, despite their public setting. Indirect communication and practices of social steganography (boyd & Marwick, 2011)—in which a message is “hidden in plain view” by making references only properly interpretable by members of an in-group— supplement these strategies and allow for nuanced socially multimodal self-performances which may be simultaneously front- and back-stage to different audiences.

Through simultaneous self-performance among multiple constitutive communities, SNS users are trained in a kind of double consciousness, in which interactions must take place within the perspective of multiple, often contradictory aspects of self—the user is e.g. gay and Southern and manly and Christian . . . This training in self-understanding is concurrent with training in managing information flows, creating public private moments and private public moments, and the fan dance of intimacy.

Incentives

Most incentive structures mobilised in SNS rest simply and directly upon basic human desires that are supported by SNS rather than being created or substantially transformed by SNS. An incomplete but indicative list might include building relationships, maintaining personal connections, maintaining and strengthening professional contacts, fun, play, hanging out, and passing time. While the phenomenology of such incentives and activities would be interesting, and while the ways in which such incentives and activities are altered by SNS would be valuable to explore, both are beyond our scope here, for in these cases SNS are largely determined by these incentive structures rather than themselves determining them.

There is, however, at least one significant form of incentive structure that is brought about through SNS consumer training which is a significant addition to or alteration of incentives within non- or pre-SNS sociality. Along with the cultural ascension of Facebook has also come the cultural prominence of the kinds of casual games well suited to the Facebook platform. These games, often called “social games” despite often having much less a social component than many other kinds of games, have been adopted by demographics not otherwise engaged in gaming, and often in remarkably addiction-like ways. Distinctive features of many such “social games”—perhaps best, but certainly at least most famously exemplified by Zynga’s Farmville—are a quick cycle from action to reward, a requirement to return to the game regularly, and periods of imposed inactivity in which the opportunity to play is withheld. Taken together, the user often experiences a strong imperative to take advantage of every opportunity to play given, in order to maximise future opportunities for play. Gaming then becomes a means to its own possibility, and the question of whether the play is enjoyable falls by the wayside.

A similar short-circuited reward structure also appears within SNS themselves. The reformulation of social interaction into microtransactions produces an addiction-like effect:

Every ping could be social, sexual, or professional opportunity, and we get a mini-reward, a squirt of dopamine, for answering the bell. “These rewards serve as jolts of energy that recharge the compulsion engine, much like the frisson a gambler receives as a new card hits the table,” MIT media scholar Judith Donath recently told Scientific American. “Cumulatively, the effect is potent and hard to resist.” (Dokoupil, 2012).

Users experience constant small rewards by checking in and checking back frequently and, conversely, experience anxiety about opportunity costs when unable to do so—this anxiety increasingly being described as “FOMO” (“fear of missing out”) (Zimmer & Carson, 2012).

These social microtransactions provide incentive structures not only through opportunities and opportunity costs, but also through logics of validation and accumulation. By transforming a moment of social exchange into a virtual object—a shared picture, status update, news article, or so on—a pseudo-commodification takes place. We see the social object enter into networked sociality, resulting in varied degrees of responses, and are gratified by large numbers of likes and shares, seemingly for its own sake. Brands and users post questions, asking members of their network to “like” the post if they agree with answer #1, and to “share” if they agree with answer #2, an activity which seems to place the churn of activity and the frisson of “reach” above any quality of content. Activity provides its own variety of social validation in a “circuit of drive” (Dean, 2010), and users caught up in the cycle of feedback are pulled towards trying to make their expressions, ideas, and images “go viral.”

Through these incentive structures, distinctive of SNS consumer training, users are brought into sometimes near-constant quick cycles of activity and response through microtransactions requiring frequent low-level engagement for frequent low-level social rewards.

Ambient awareness

The final aspect of the phenomenology of SNS use that we will here address has been described as “ambient virtual co-presence” (Horst et al., 2007; Ito & Okabe, 2005b). Through frequent SNS posts or SMS messages, often of little inherent or individual interest or value, users are able to maintain a feeling of proximity and connection. Users find value in knowing what others in their network are up to, even though what they are up to may not be of any particular interest. This is partially connected to FOMO, but extends further—through ambient virtual co-presence we gain a feeling of social connection which extends beyond the mere alleviation of anxiety about possible social disconnection. This virtual co-presence is significant enough an aspect of SNS use that some prominent behaviours, e.g. sharing photographs of one’s lunch, can hardly be made sense of unless it is understood that these forms of “sharing” are intended as relational actions, not informational exchanges (Wittkower, 2012).

In ambient virtual co-presence, users obtain a feel for the texture of life of those in their networks, and a background awareness of recent events in the lives of their connections. Through these means, the user is virtually co-present along with others. This is paralleled by a different form of ambient awareness, in which others are virtually co-present along with the user. This form of ambient awareness, which we may call “potential being-with,” is nothing but ambient virtual co-presence viewed from the other end: the user, before sharing an anecdote about their day or a photograph of a misused apostrophe, is of course aware of the ambient virtual co-presence that their connections will experience, and so, when experiencing the to-be-shared experience, experiences it as in prospective retroactive virtual community with others.

Taking virtual co-presence and potential being-with together—and considering that we ideate virtual co-presence and potential being-with regarding communities, networks, groups, and pages, as well as individual users—a complex picture of ambient awareness emerges. SNS users, when fully trained in the habits of ambient awareness, carry their networks around with them in constant potential retroactive virtual co-presence—users experience everything around them as in principle sharable, thus, not only “alone together” (Turkle, 2011), but (potentially virtually) together, even when “alone.”

Avenues of educational expropriation

With this incomplete phenomenology of consumer training on SNS in place, we are able to consider some ways in which these skills, literacies, and habits may be expropriated by educators. These considerations are intended to be suggestive and exploratory rather than exhaustive and conclusive—these few examples are meant to illustrate and exemplify how consumer training may be expropriated, not to identify universal or preferred methods of doing so. We expect that the reader is likely to gain more by considering how her own objectives and environment could be well served by alternate forms of expropriation than by considering wholesale adoption of the assignments and exercises here described.

We will begin with an in-depth example, describing an innovative process we have already implemented that takes advantage of many of the identified forms of consumer training. Following this, we will consider a variety of other kinds of possible avenues of expropriation. It should be emphasised that we wish to consider here ways in which consumer training on SNS can be mobilised, which does not necessarily require actually using SNS in course activities—although, of course, the use of SNS may often aid in the transfer of relevant skills and habits.

In a course currently offered by one author of this paper, in which the other author is an embedded librarian, we have implemented a modified version of an annotated bibliography assignment. Students are to join a Facebook group, into which they post links to material relevant to our course, accompanied by a 100-word annotation, in which they present the linked material and discuss its relevance to course readings or classroom discussion. Students receive course credit for each annotation, but also receive additional credit if one of their classmates uses their post as a source in their paper. It is explained to students that the intention of this additional credit is to encourage them to find material that’s as relevant as possible, and to write annotations which make the source as approachable and adaptable to coursework as possible. In this way, a collaborative and collective resource is created, proving students having difficulty thinking of paper topics with a rich set of peer-recommended areas of interest, and allowing ‘clusters’ of research topics to emerge, as students share topics of interest to them and influence their peers to begin to pay attention to and think about related issues.

This process uses consumer-trained social informatics to curate crowdsourced research materials. Students are able to have scalable and multiplex interactions: they may set their privacy settings, picture, and even name so that they are more or less easily recognisable in offline settings. We have seen students with previous offline relationships like and comment on one anothers’ posts online, students choose to conceal their identity online entirely and remain silent in class, and students who did not previously know one another follow up in-person on online interactions—and conversely, follow up on in-person conversations by online posting of annotated bibliography sources. Though current research trends show that students prefer not to mix their academic and social lives (Educause, 2013), our experience is that when given the opportunity to use Facebook in place of Blackboard or a similar course management system (CMS), students responded positively. Surveys indicated that our students found that the use of the Facebook group for both the annotated bibliography assignment, and for communicating with the professor and embedded librarian was either “very useful” or “useful” in comparison to using Blackboard, and 92.3% of students did not have concerns in regards to privacy, given that interaction took place only through group membership and that students were encouraged to lock down privacy settings. The general consensus among students was that they are already logged into Facebook for much of the day, so it was convenient for them to post and check the class Facebook group in lieu of logging into our university CMS.

In addition to drawing upon training in social informatics, interactions, and audience and identity construction, this also provides the distinct microtransation incentive structure of liking and sharing, in three ways. First, in a literal sense: even though the student may not have any pre-existing or continuing relationship with their classmates, it is safe to assume that when one of them likes, comments on, or shares a post, this positive peer reinforcement is validating in the same sort of way as it would be within recreational Facebook use among an intentional community of friends. Second, the small scale of the assignment provides for a quick cycling and pervasive action-reward cycle between student and instructor, allowing for a great many points of contact at a low opportunity cost for the instructor.[2] Third, the desire for reach, influence, and virality can also serve as a motivation to students, as they see some posts get a robust response (several peer likes, maybe being brought up in class on the following day) while others fall relatively flat.

Finally, we expect that, among some more active students at least, ambient awareness can be mobilised. This, more so than any other aspect of the assignment and process, could be especially educationally valuable; even transformative. If, over the course of the semester, students become accustomed to bringing their classroom network along with them as potentially retroactively co-present in current experience, they will begin to encounter ever more aspects of everyday life along with the question ‘how would this fit into class X?’ We find it difficult to imagine a more desirable educational outcome, for this means that students will have, over a period of months, developed a habit of using course materials as a mode of interpreting their experience in pervasive ways and in quotidian, non-academic settings. Such is the ideal of education in critical thinking and enlightened reasoning.

Other possible avenues to consider might be:

  • Scalable involvement in collaborative projects. Rather than assigning students to groups, assign projects to virtual or physical spaces, allowing students to self-organise into groups and act between and across projects. Depending on the exact design approach, this could draw on training in social informatics, interactions, and audience construction.
  • Students could create course-specific profiles variously attached to different interest groups, topics, or projects within a course, allowing for multiplex interactions and fluid involvement in groups of common concern among peers. This organisational structure could use training in social informatics, interactions, identities, and ambient awareness to structure, motivate, and coordinate collaborative work.
  • Peer assessment or peer “badging.” Students might be given a certain number of points in the course, or badges (e.g. Best In-class Questions, Team Player, Best Online Comments) worth points, that they give to peers to recognise and reward valuable peer contributions to student learning. This sort of reputation economy would draw on training in SNS incentive structures, interactions, and social informatics.
  • In-class use of online polling (e.g. Poll Everywhere) to introduce quick cycling of feedback, drawing on training in incentive structures, and multiplexibly scalable into full class discussion, small group discussion, or backchannel chat on a course Facebook page or using a course hashtag on Twitter.
  • Use of social gaming trained incentive structures to allow students to move flexibly upwards through a hierarchy of tasks rather than working through a set list of assignments in order. For example, some assignments may “unlock” at a certain student point count, requiring students to ‘level up’ through foundational work (a short paper on methods, for example, or assembling outlines and lit reviews) towards higher-level and synthetic work, determining their own path and progress.
  • Use of QR codes to develop games for campus-wide learning objectives, such as a freshman orientation program. This could create an ambient awareness, where the interactive game would allow them to feel connected to the university and the other students participating in the game across the campus, and could perhaps have benefits for academic success and retention rates.
  • Many university organisations or classes require study or observation hours. The creation of a “Foursquare” type of game—possibly but not necessarily actually using Foursquare—would allow students to check in via their mobile devices, and allow students to become the mayor of a specific location, such as the library, a lab or a study room, and to earn academically-relevant badges This would draw on the identities and incentive structure elements of consumer training, and as students check in to various locations they would take ownership of being a part of that learning communit

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Figure 1. Visualisation of the interconnections between possible forms of expropriation

Concluding comments

We hope to have presented a method, a set of resources, and a sampling of applications that can be modified to meet the needs of a variety of classroom situations. We do not expect that each will be useful to every reader, but we hope that the reader will find one or the other of use—if not the method of educational expropriation of consumer training, then perhaps the insights in digital nativity illustrated by the phenomenology of SNS consumer training; and if not the SNS phenomenology, then perhaps the concrete assignment and activity structures. The number of college students that use SNS sites such as Facebook is steadily on the rise, as is the number of students that have easy access to mobile phones and tablets (Educause, 2013). The opportunity for educators to make use of the consumer training that these readily available technologies provide cannot be ignored and can make for a much more meaningful and relevant educational experience for students of today.

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