HIV/AIDS Prevention and Care: Who to Involve and How to Promote Participation

Horizons/Population Council

These studies from India, Thailand, and Cambodia focused on the processes through which a range of new partners (health care NGOs, business organisations, PLWHA, or people at high risk such as sex workers) can be drawn into the AIDS field. In Chennai, India, YRG Care - a well-known AIDS Service organisation in India - did a "case study" of the scaling-up of four NGOs to include the provision of care for PLWHA. This up-scaling exercise aimed to bring competent, non-stigmatising health care closer to PLWHA, as most health services meet PLWHA with suspicion and stigma. Four new partner organisations were selected for up scaling. These already had HIV prevention activities, the capacity to provide medical treatment to PLWHA, and were keen to expand their activities. The research focused on identifying the new partner organisations" needs and describing the process of involvement. Lessons learnt from the process were - it is as important to strengthen existing services, as is it to introduce new ones. In up-scaling activities, counselling should be one of the first new services to be introduced, because when HIV prevention activities increase people's awareness, demand for counselling and testing increases. The lack of resources is not the greatest barrier to service provision - the lack of skills is. The second study focused on the functioning of PLWHA in Indian NGOs.

The study identifies four stages of PLWHA involvement: Access - PLWHA use NGO services but do not provide them; Inclusion - PLWHA are only involved as support staff in non-HIV activities; Participation - PLWHA are employed and paid for work in HIV; Involvement - PLWHA are decision-makers and play an important role in management and planning. PLWHAs role depended partly on the type of organisation. Welfare-oriented organisation and community- based organisations most often used the "inclusion" and "participation" model. Only organisations involved in advocacy and promotion of PLWHA rights fully involved PLWHA in all levels of organisation. Gender and social class also played a role: most "involved" PLWHA were male, middle-class, with a higher level of education. In contrast, "included" PLWHA were either male or female and had lower education. The study emphasises that it is therefore very important to provide skills training to PLWHA so they can do their difficult jobs well.