Community Matters: Lessons from a Bridging the Gaps research programme
The International Network of People who Use Drugs, Mainline, King's College London, AFEW International, the South African Network of People who Use Drugs, AFEW Kyrgystan and Rumah Cemarah are excited to share the results of a three year research programme exploring how community involvement impacts the quality and accessibility of harm reduction services for people who use drugs. This research, supported through the Bridging the Gaps II programme, was completed from 2018 through 2020 as part of a community-academic partnership across Indonesia, Kyrgyzstan and South Africa which were linked to a ‘rapid review’ of the literature on low and middle-income countries.
Evidence from our report shows how difference forms of community involvement across these three countries impact harm reduction access and quality, especially in low and middle income settings. We hope this evidence base can guide the scaling-up of community involvement efforts globally in support of harm reduction targets.
Following is a background of each case study:
Indonesia: peer-led case management and ART access
- Peers leading case management strategies is a priority intervention in Indonesia within harm reduction and HIV referral services, including within government-run community health centers.
- Rumah Cemara initiated a three-year Community-led Mobile Harm Reduction Management programme aimed at improving access to health, social and legal services for people who inject drugs and their partners/spouses in 4 priority cities.
- Within these services a peer case management programme to support ART retention of people who inject drugs living with HIV was initiated, where peers are integrated within harm reduction and HIV referral services. Until now there has been no in-depth qualitative study on how community engagement impact accessibility and quality of ART.
- A core question for this study was: How does peer engagement within ART case management influence access, adherence, and quality of HIV care services offered by ART service providers?
Kyrgyzstan: the experiences of women who use drugs ina ccessing services, and in advocating for service access and quality
- There is limited understanding of the health and social support needs and of women who use drugs in Kyrgyzstan, and of the role of community mobilization in addressing these support needs.
- Two women-run centres based at the facilities of NGOs called Asteria and Podruga provide services targeting the specific needs of women who use drugs. Additionally women who use drugs are actively involved in advocacy to shape the availability of harm reduction services.
- A participatory research project was implemented to explore this gap in knowledge, building a partnership between AFEW Kyrgyzstan, Asteria and organisations led by people who use drugs.
- The country team sought to understand how women leaders become involved in the development and implementation of HIV policies and programs, and how their participation affects the quality and accessibility of services in Kyrgyzstan.
South Africa: peer-staff in community oriented primary care
- Despite recent policy shifts leading to limited support for community involvement, the rights of people who use drugs and the provision of harm reduction services have been either ignored or actively challenged by the police and policymakers.
- TB/HIV Care Association secured funding from PEPFAR/CDC to implement the Step Up project, a harm reduction demonstration project which includes the involvement of people who use drugs through community advisory groups (CAGS) as a key principle. CAGS were described by service users as integral.
- The University of Pretoria partnered with the Step Up project to develop the community oriented substance use programme (COSUP), which embraced the principle of community participation. The developers of COSUP felt the inclusion of people who use drugs at various level sof service design and delivery was essential to the programme.
- This case study seeks to support a scale-up of the project by understanding questions such as: what roles peers perform, how they are received by non-peers, whether peers are trusted and respected by others within the clinic, what impact does peer involvement have on peers themselves, and what support systems are best for addressing the needs of peers.
Based on this cumulative research we have four core messages:
- More ambitious support is needed for expanded community involvement in harm reduction services
- Community involvement can support increased access and quality of harm reduction services
- Community leadership delivers research with impact
- Research agendas need to expand and methodologies need to adapt