Abstract
BACKGROUND: Little is known about actual involvement or how to achieve service user and caregiver in mental health systems strengthening in low-and middle-income countries. This study describes the processes and explores involvement experiences of participants in a pilot study of a new model of service user involvement in mental health system strengthening in a rural district in southern Ethiopia. METHODS: We applied a case study design using participatory action research (PAR). The PAR process comprised of three stages, each with iterative activities of plan, act, observe and reflect. Two stakeholder groups, a Research Advisory Group (RAG) and Research Participant Group (RPG), were established and collaborated in the PAR process. Data collection involved process documentation of meetings and activities: attendances, workshop minutes, discussion outputs, reflective notes, participatory observation of sessions, and in-depth interviews with 12 RPG members. We analyzed the process data descriptively. Thematic analysis was used for qualitative data. Triangulation and synthesis of findings was carried out to develop the case study. RESULTS: The stakeholder groups identified their top research priorities, developed an intervention and action plan and made a public presentation of preliminary findings. Key mechanisms used for inclusive participation included capacity building and bringing together diverse stakeholders, anchoring the study in established strong community involvement structures, and making use of participatory strategies and activities during the PAR process. Four themes were developed about experiences of involvement in PAR: (i) expectations and motivation, (ii) experiences of the dynamics of the PAR process, (iii) perceived impacts of involvement in the PAR process, and (iv) implementation challenges and future directions. CONCLUSIONS: This case study demonstrated the feasibility and acceptability of implementing a complex model of service-user involvement in mental health system strengthening in a resource constrained setting. More needs to be done to embed service-user involvement into routines of the primary healthcare system, alongside sustained support and strengthening multi-stakeholder collaboration at multiple levels.