Access to antiretroviral treatment (ART) has helped enable people living with HIV (PLHIV) to live longer, fulfilling lives. Improved health and wellbeing has allowed PLHIV to plan for their futures, futures that include sex, sexuality, and the possibility of starting or expanding families. A comprehensive approach to sexual & reproductive health (SRH) for PLHIV across India has been lacking, and in most places current interventions are inadequate. Key populations vulnerable to HIV such as sex workers, men who have sex with men, transgenders, and people who inject drugs are similarly challenged to find supportive and responsive SRH services.
Stigma and discrimination marginalise PLHIV and key populations limiting their access to and uptake of SRH services. Studies show that people living with HIV have higher levels of unmet contraceptive need, more untreated Sexually Transmitted Infections (STIs), and knowledge gaps on positive prevention. Among PLHIV from key population groups, these indicators are even more dismal.
In response, India HIV/AIDS Alliance (Alliance India) implemented the Koshish programme from April 2011 to March 2014 in four states: Andhra Pradesh, Tamil Nadu, Gujarat and Maharashtra. Supported by the European Union, this programme aimed to strengthen and advance the SRH and rights of PLHIV and other key populations through advocacy.
In each state, an advocacy coalition was established that typically consisted of the lead partner non-governmental organisation (NGO), the state-level PLHIV network (SLN), five district-level PLHIV networks (DLNs), and five community-based organisations (CBOs) for key populations, along with representation from eight additional civil society constituencies. The coalition was responsible for determining SRH advocacy priorities in each state and designing and implementing strategies to reach key decision makers to ensure better policies and programming responsive to the SRH needs of PLHIV and key populations.
In order to understand the effect that Koshish has had on the communities it engaged, the programme considered a variety of evaluation options. To maintain the central place of community voices, we developed a qualitative study that considered intermediate outcomes and changes in the lives of these communities during the course of the project.
The study applied an adapted version of the Most Significant Change (MSC) technique (Dart & Davis, 2003) that gauged outcomes and impact of the programme through the qualitative analysis of stories of change from programme beneficiaries. This methodology was community-driven and participatory and ensured that the evaluation of Koshish directly involved those people served by the programme.
The study was conducted over a three-month period in 2013 in the four Koshish states. Stories were collected by a trained field team comprised of programme beneficiaries and peer leaders from PLHIV and key population communities and networks. The lead consultant Sameer Thakur coordinated the study design, execution and analysis, along with Alliance India team members, staff from lead partner NGOs, SLNs, DLNs and other CBOs in each state. As part of the process, particular effort was made to build the capacity of community members on research methodologies and data collection processes in the field.
The stories presented in Alliance India’s new publication Speaking Out for Sexual Health tell of changes within four major domains: personal change; changes in participation; changes in capacity; and challenges. These moving personal stories of change can serve to inform ongoing efforts to improve programme implementation, enrich policy discussions, and ensure the SRH and wellbeing of PLHIV and key populations remain policy and programming priorities.
This post is based on the preface to the Alliance India publication Speaking Out for Sexual Health: Stories of Significant Change from PLHIV and Key Populations.
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