Only connect – the role of PLHIV group networks in increasing the effectiveness of Ugandan HIV services

Abstract

In recent years, Uganda has experienced rapid growth in networked groups of people living with HIV (PLHIV) who provide support, engage in advocacy, treatment and care and raise the profile of HIV in the public domain. This qualitative study focused the benefits of joining a networked group, relationships between groups, impact of networked groups on the community and shaping private and public experience living with HIV. Data were collected from two Ugandan districts, using semi-structured interviews, focus group discussions (FGDs), observation and reviews of group records and archives. Respondents (n=46) were adults living with HIV, and members of rural and urban PLHIV groups. Narratives from PLHIV (n=27) were gathered, and records from PLHIV group service-registers (n=20) reviewed. Key Informants (n=15) were purposively selected for interview, based on participation in PLHIV groups, utilisation of network services and their positions as key stakeholders. FGDs were held with network support agents (NSAs), members of PLHIV groups, and their leaders. Following qualitative analysis, findings suggest that for respondents, PLHIV networks enhance the impact and effectiveness of individual groups: the whole is greater than the sum of the parts. For groups, being part of a wider network allows for diversity of service delivery, and well-defined roles for individuals to participate in community support and sensitisation, with a reduction in the experience of stigma. We conclude that networking PLHIV groups is an effective strategy for improving the quality and reach of community-based HIV services. Governments should be encouraged to support networks and include them in policy-making at the national level. Local and regional groups should explore further ways to collaborate and expand support to PLHIV in Uganda.

Keywords:

• networks
• PLHIV
• disclosure
• health systems strengthening
• HIV care

Acknowledgements

We are thankful to study participants and partners, including TASO and MRC/UVRI, and to Dr Fabian Cataldo for his key role in developing the protocol. We also acknowledge Dr Alvaro Bermejo's comments on the article. The study was funded by Sida, through the Africa Regional Program of the International HIV/AIDS Alliance, and DFID through the Evidence for Action Research Consortium.