Power to participants: a call for person-centred HIV prevention services and research.

INTRODUCTION: While biomedical HIV prevention offers promise for preventing new HIV infections, access to and uptake of these technologies remain unacceptably low in some settings. New models for delivery of HIV prevention are clearly needed. This commentary highlights the potential of person-centred programming and research for increasing the cultural relevance, applicability and use of efficacious HIV prevention strategies. It calls for a shift in perspective within HIV prevention programmes and research, whereby people are recognized for their agency rather than assumed to be passive beneficiaries or research participants. DISCUSSION: Person-centred HIV prevention reorientates power dynamics so that individuals (rather than interventions) are at the centre of the response. Respecting personal choice and agency - and understanding how these are shaped by the context in which people exercise these choices - are critical dimensions of the person-centred approach. Community-based participatory research should be employed to inform and evaluate person-centred HIV prevention. We argue that community-based participatory research is an orientation rather than a method, meaning that it can be integrated within a range of research methods including randomized controlled trials. But embracing community-based participatory approaches in HIV prevention research requires a systemic shift in how this type of research is reported in high impact journals and in how research impact is conceived. Community-based organizations have a critical role to play in both person-centred HIV prevention and research. CONCLUSIONS: HIV prevention is situated at the intersection of unprecedented opportunity and crisis. Person-centred approaches to HIV prevention and research shift power dynamics, and have the potential to ensure a more sustainable response with each individual actively participating in their own care and meaningfully contributing to the production of knowledge on HIV prevention. This approach taps into the resourcefulness, resilience and knowledge of the person and their communities, to strengthen research and programmes, making them more relevant, appropriate and effective.

Resisting and challenging stigma in Uganda: the role of support groups of people living with HIV.

INTRODUCTION: Global scale up of antiretroviral therapy is changing the context of HIV-related stigma. However, stigma remains an ongoing concern in many countries. Groups of people living with HIV can contribute to the reduction of stigma. However, the pathways through which they do so are not well understood. METHODS: This paper utilizes data from a qualitative study exploring the impact of networked groups of people living with HIV in Jinja and Mbale districts of Uganda. Participants were people living with HIV (n=40), members of their households (n=10) and their health service providers (n=15). Data were collected via interviews and focus group discussions in 2010, and analyzed inductively to extract key themes related to the approaches and outcomes of the groups' anti-stigma activities. RESULTS: Study participants reported that HIV stigma in their communities had declined as a result of the collective activities of groups of people living with HIV. However, they believed that stigma remained an ongoing challenge. Gender, family relationships, social and economic factors emerged as important drivers of stigma. Challenging stigma collectively transcended individual experiences and united people living with HIV in a process of social renegotiation to achieve change. Groups of people living with HIV provided peer support and improved the confidence of their members, which ultimately reduced self-stigma and improved their ability to deal with external stigma when it was encountered. CONCLUSIONS: Antiretroviral therapy and group-based approaches in the delivery of HIV services are opening up new avenues for the collective participation of people living with HIV to challenge HIV stigma and act as agents of social change. Interventions for reducing HIV stigma should be expanded beyond those that aim to increase the resilience and coping mechanisms of individuals, to those that build the capacity of groups to collectively cope with and challenge HIV stigma. Such interventions should be gender sensitive and should respond to contextual social, economic and structural factors that drive stigma.

Costing human rights and community support interventions as a part of universal access to HIV treatment and care in a Southern African setting.

Expanding access to antiretroviral therapy (ART) has both individual health benefits and potential to decrease HIV incidence. Ensuring access to HIV services is a significant human rights issue and successful programmes require adequate human rights protections and community support. However, the cost of specific human rights and community support interventions for equitable, sustainable and non-discriminatory access to ART are not well described. Human rights and community support interventions were identified using the literature and through consultations with experts. Specific costs were then determined for these health sector interventions. Population and epidemic data were provided through the Statistics South Africa 2009 national mid-year estimates. Costs of scale up of HIV prevention and treatment were taken from recently published estimates. Interventions addressed access to services, minimising stigma and discrimination against people living with HIV, confidentiality, informed consent and counselling quality. Integrated HIV programme interventions included training for counsellors, 'Know Your Rights' information desks, outreach campaigns for most at risk populations, and adherence support. Complementary measures included post-service interviews, human rights abuse monitoring, transportation costs, legal assistance, and funding for human rights and community support organisations. Other essential non-health sector interventions were identified but not included in the costing framework. The annual costs for the human rights and community support interventions are United States (US) $63.8 million (US $1.22 per capita), representing 1.5% of total health sector HIV programme costs. Respect for human rights and community engagement can be understood both as an obligation of expanded ART programmes and as a critically important factor in their success. Basic rights-based and community support interventions constitute only a small percentage of overall programmes costs. ART programs should consider measuring the cost and impact of human rights and community support interventions as key aspects of successful programme expansion.