Background: Recent reviews have highlighted the need for participatory research to design and evaluate inclusive, community-based interventions that address the diverse needs of people with lived experience of psychosis, within and beyond the health sector. The SUCCEED Africa consortium aims to co-produce a six-year programme of research following a Theory of Change-driven approach. This protocol describes the pilot study in which SUCCEED’s community-based intervention, research tools and processes will be tested on a small scale in four countries (Malawi, Nigeria, Sierra Leone, Zimbabwe) in preparation for larger-scale evaluation research.
Methods: The pilot uses a before-and-after study design investigating change in subjective quality of life (WHOQOL-BREF) in adults diagnosed with a primary psychotic disorder or another mental disorder with psychotic symptoms who are offered the SUCCEED intervention over a four-month period. Nested within this study are: a baseline assessment of the feasibility, acceptability and face validity of WHOQOL-BREF as a measurement tool and validity of proxy versus self-completion; and a multi-method process evaluation examining key process indicators and implementation, service and client-level outcomes. Methods include: baseline cognitive interviews; semi-structed observation and routine monitoring and evaluation of service delivery; endline interviews and focus group discussions; and a comparison of provider competencies at endline (using an adapted version of the ENACT tool). At each of the four pilot sites, participants will include: ten people with lived experience of psychosis, recruited from either health services or community settings using purposive sampling to maximise variation; up to ten adult family members (one per participant with lived experience) involved in their care; the peer support worker, community support worker and supervisor responsible for the intervention; and the data collector responsible for administering WHOQOL-BREF. Recruitment will take place in July and August 2023.
Discussion: To the best of our knowledge, this will be the first study of a community-based intervention incorporating lay-delivered case management, formal peer support and livelihoods activities for people with lived experience of psychosis in sub-Saharan Africa. Findings will be relevant not only to SUCCEED but also to others interested in promoting rights-based approaches to community mental health in low-resource settings.
Trial Registration: US National Library of Medicine (ClinicalTrials.gov), Protocol reference ID 28346. Initially registered retrospectively July 20/2023: In review.