‘Dissemination as intervention’: building local AIDS competence through the report-back of research findings to a South African rural community

There is much debate about researchers’ ethical obligations to their informants, especially when they study marginalised communities in serious distress. Some say researchers should contribute to interventions to ameliorate the problems they investigate. Within this context, we report on a ‘dissemination as intervention’ exercise developed to report back research findings to a South African rural community -- using a dialogical approach which sought to strengthen participants’ confidence and ability to respond more effectively to HIV/AIDS. Nine workshops were conducted with 121 participants (78 women, 41 men) including religious and traditional leaders, health volunteers, development and sewing groups, scholars, youth out-of-school, traditional healers and teachers. Workshop transcripts, fieldworker diaries and participant debriefing sessions were subjected to thematic content analysis. Workshops provided many with their first opportunity to discuss HIV/AIDS in a supportive context (in a wider climate of fear and denial) and to identify how their individual and collective responses were hampered by gender and age inequalities, stigma, resistance by local leaders and lack of outside support. Workshops alerted participants to the valuable role played by local volunteers and facilitated reflection on how they might support volunteers, assist those living with HIV/AIDS and protect their own sexual health. We highlight variations in the way different groups engaged with these topics in terms of both style of engagement and content of discussions. Workshops provided opportunities for participants to develop critical understandings of the possibilities and limitations of their responses to a pressing social problem, understandings which constitute a necessary (though not sufficient) condition for further action

Supporting youth: broadening the approach to HIV/AIDS prevention programmes

The aim of many HIV/AIDS-awareness campaigns is to pass on knowledge. This assumes that people – particularly young people – practise unsafe sex and become infected with HIV because they lack the necessary information. But it is now clear that even with the right information, many youth do not take steps to protect themselves from infection. As a result they are often blamed for the problems facing HIV/AIDS prevention. However, this book argues that blaming youth is not fair and that it is not just youth who need to change. Social circumstances often make it very difficult for youth to take precautions and it is these social circumstances that need to change as well. Knowledge is only one component – or part – of a number of components that are essential for behaviour change and HIV/AIDS prevention. The conversation on the next page raises some of these other components

“I Have an Evil Child at My House”: Stigma and HIV/AIDS Management in a South African Community

We examined the social roots of stigma by means of a case study of HIV/AIDS management among young people in a South African community (drawing from interviews, focus groups, and fieldworker diaries). We highlight the web of representations that sustain stigma, the economic and political contexts within which these representations are constructed, and the way in which they flourish in the institutional contexts of HIV/AIDS interventions. Stigma serves as an effective form of “social psychological policing” by punishing those who have breached unequal power relations of gender, generation, and ethnicity. We outline an agenda for participatory programs that promote critical thinking about stigma’s social roots to stand alongside education and, where possible, legislation as an integral part of antistigma efforts

Youth participation in the fight against AIDS in South Africa: from policy to practice

Effective youth participation in social development and civic life can enhance young peoples' health and well-being. Yet many obstacles stand in the way of such involvement. Drawing on 105 interviews, 52 focus groups and fieldworker diaries, this paper reports on a study of a rural South African project which sought to promote effective youth participation in HIV/AIDS management. The paper highlights three major obstacles which might be tackled more explicitly in future projects: (i) reluctance by community adults to recognise the potential value of youth inputs, and an unwillingness to regard youth as equals in project structures; (ii) lack of support for meaningful youth participation by external health and welfare agencies involved in the project; and (iii) the failure of the project to provide meaningful incentives to encourage youth involvement. The paper highlights five psycho-social preconditions for participation in AIDS projects (knowledge, social spaces for critical thinking, a sense of ownership, confidence and appropriate bridging relationships). We believe this framework provides a useful and generalisable way of conceptualising the preconditions for effective 'participatory competence' in youth projects beyond the specialist HIV/AIDS arena

Supporting people with AIDS and their carers in rural South Africa: possibilities and challenges

Under-served rural areas—home to over half of people in sub-Saharan Africa—bear a heavy HIV/AIDS burden. We present a case study of the existence and quality of support networks available to people with AIDS and their carers in a South African rural area. Drawing on 45 interviews and 13 focus groups, we identify key local HIV/AIDS-relevant actors and agencies in civil society, the public and the private sectors. The most effective support comes from families and neighbours, volunteer health workers and two lone missionaries. This support is undermined by counter-productive responses by faith-based organisations, traditional healers and local leaders, and by poor levels of support from public and private sector agencies. We discuss ways in which existing and latent networks might best be strengthened and supported