Cath Conn, DPM
Shoba Nayar, PhD
Dinar Lubis, MPH
Carol Maibvisira, MA
Kristel Modderman, MPH
Publication Date

Jul-Sept 2017


School of Public Health and Psychosocial Studies, Auckland University of Technology

Drawing on four cases of research from Africa and South East Asia, this paper discusses the possibilities for youth "prosumerism" as a participation mechanism in HIV prevention, particularly in light of new opportunities arising from a digital society. Toffler first coined the term "prosumer" in 1980 to reflect the blurring of lines between consumer and producer. "Collaborative commons and prosumer models, defined as people employing technology to codesign toward a common goal, resonate with activist- or empowerment-type participation in that they are about people taking action independently of traditional institutions." The context of the investigation is the observation that "[s]tigma, voicelessness, and legislative and rights barriers, coupled with top-down decision making, are the common experiences of vulnerable youth populations that limit their opportunities to participate in vital health promotion efforts such as HIV prevention."

The studies, conducted between 2006 and 2015, took place in two sub-Saharan Africa locations with generalised HIV epidemics (Busoga, Uganda; and Bulawayo, Zimbabwe) and two locations in South East Asia with epidemics concentrated in key populations (Bangkok, Thailand; and Bali, Indonesia). These studies mainly use participatory and action methodologies that actively seek to position participants as co-researchers who shape the choice of study methods and help analyse data to develop research findings and recommendations. In brief, the studies include:

  • Young Women of Busoga, Eastern Uganda: Their Lives and HIV Prevention - Straight Talk Foundation, a Uganda-based HIV communication non-governmental organisation (NGO), were concerned about the voicelessness of young women in the space of programmes, schools, and communities. In their study, 15 young women of Busoga, aged between 15 and 19 years, used narrative tools - drawing, drama, and written stories - to depict their life experiences and views in relation to the challenges of HIV. Recommendations included: promote girl-friendly schools, hire more female teachers as symbols of equity and empowerment, and involve allies such as media in the social change agenda.
  • Youth Perceptions of School-Based HIV Prevention Sex Education in Bulawayo, Zimbabwe - A participatory action research partnered with 8 women and 8 men aged between 18 and 24 years from Bulawayo. Acting as co-researchers, the young people participated in 10 action-oriented focus groups to explore their personal experiences of HIV prevention sex education and to design alternatives, characterised by an ability to voice their queries and concerns openly, even where these are taboo subjects. Recommendations centred on the need for change in the educational environment of schools, along with the need to be more student driven and to support creative and relational HIV prevention sex education.
  • Young Women Sex Workers and Participation in HIV Programs in Bangkok, Thailand - Using semi-structured interviews, this study explored the participation views and strategies of 5 young women sex workers and 2 community support workers from Bangkok. Recommendations were for a more comprehensive empowerment approach to participation by young women sex workers by positioning young women as more than experts and peer educators, taking into consideration their need for safety as leaders and co-decision makers within accountable programmes.
  • Young Men Who Have Sex With Men [YMSM] and Internet-Based HIV Prevention in Bali, Indonesia - In this study, participatory action research was used for a study that partnered with 9 YMSM in Bali. The research comprised a series of eight action-oriented focus group discussions, moving from scoping to design using mapping and video. Recommendations included an internet-based HIV prevention more relevant to YMSM, shaped by them in terms of design and delivery, with a clear need to address a social environment characterised by the lack of sexual rights and by stigma and discrimination.

Three common themes relevant to this paper emerged from these studies.

  1. Youth aspired to have a say in HIV prevention through creative and empowering ways relevant to their lives. For example, in Bali, YMSM designed 2 videos for Web-based viewing, promoting condom use using forthright, taboo-based language and ideas that had personal meaning. This reflects findings from similar studies within technology-enabled settings, where youth favoured the use of computers and being involved in design of content specifically for them. However, they also qualified this with concerns about the role of adults and issues of privacy and safety.
  2. There are significant institution-related barriers to youth involvement. "HIV prevention initiatives were found to be didactically delivered, with standardized designs and mass media developed and delivered with little or no participation from youth. HIV prevention largely lacked relevance for youth, as it did not reflect their lives, identities, or preferences."
  3. Harmful social environments were central to the vulnerability of youth in relation to HIV. For example, in Thailand, young women sex workers entering sex work at a young age were subject to multiple vulnerabilities, including poverty, low levels of education, and gender inequality. Social environments, which create many of the conditions of vulnerability, limit opportunities for participation, including the ones that might involve technology. There was little evidence from the studies of institutions suggesting their role as contributors to change in the social environment.

The paper's discussion section explores ways forward for participation by youth in HIV prevention in a digital society. Studies from other settings have shown that new technologies can enable youth prosumerism. In the context of large class sizes and overburdened teachers, increased access to affordable mobile phones or tablets could support new ways of technology-enabled sexuality education, using innovations such as serious games and empowerment-based storytelling or other collaborative tools for sharing ideas and opinions in the space of school. "However, students will increasingly be able to access information on sexuality education and networks outside of school....Instead of standard messages, they will be able to access diverse information relating to sexual and social relationships and share or reproduce these using their own style of communication as observed in the studies presented above. Thus, in the context of these changes, HIV prevention programs and institutions must seek alternative roles and ways of partnering with youth to harness creativity in these new styles of programs and initiatives." Furthermore, it is noted that technology offers the potential to go beyond co-design and information sharing to youth using the internet to develop their own initiatives, including advocacy and entrepreneurship for HIV prevention.

Unlike in some contexts, in both the Bali and Thailand studies described above, the major barrier to extending participation was not the availability of technology itself but a lack of safety, with youth experiencing multiple vulnerabilities, including stigma, illegality, and violence. "In such cases, the challenge is how to empower and involve youth but without exposing them to harm and while providing strategies to challenge harmful norms. For these reasons, privacy, safety and anonymous collaboration through private Internet-based networks will be important in future, given the sensitive nature of the subject of sex and sexuality and the significant stigma existing in many contexts....Flexible spaces and funding for youth-driven HIV prevention would be valued, moving away from standard messages to those which are more specific to the diverse youth contexts, thereby offering greater scope for privacy and being less bounded by institutional agendas." That said, "schools and other institutions will still have an important role to play in supporting young people by creating opportunities for digital literacy; creating spaces to discuss challenging issues; sharing opinions in a safe environment; and advocating for the rights of young people, including those relating to gender and sexuality."

In conclusion: "This paper explored the possibilities offered by widening access to technology for vulnerable youth to participate in HIV prevention as prosumers, that is, as being active in seeking empowerment and change; as codesigners of educational tools; and as collaborators and networkers sharing stories and views....Future participation is likely to embrace different paradigms and language, thereby facilitating the emergence of different actions and actors; innovation and creativity will become as important as information, which is readily accessed."


JMIR Public Health Surveillance 2017; 3(3):e53 DOI: 10.2196/publichealth.7812. Image caption/credit: Condom counselling at the Service Workers In Group (SWING) Foundation. UNAIDS Asia-Pacific