Psychosocial rehabilitation for schizophrenia : developing a community-based approach to promote recovery in Dr Kenneth Kaunda district, South Africa.
Background: Schizophrenia, a chronic and severe mental illness, contributes significantly to the global burden of disease and disability. In addition to biomedical treatment, service users with schizophrenia require psychosocial rehabilitation (PSR) which comprises a variety of psychosocial interventions aimed at promoting recovery. In low and middle income countries (LMIC) a task-sharing approach to provision of PSR is recommended, however there are few intervention studies from LMIC and none from a low-resource South African context. This doctoral work addressed this gap in evidence through developing a contextually appropriate, task-shared, manualised support group intervention for PSR in Dr Kenneth Kaunda district, delivered by auxiliary social worker (ASW) facilitators. Development of the intervention was guided by the UK Medical Research Council (MRC) framework for complex interventions. Given the requirement for intersectoral collaboration for scale-up of task-shared PSR indicated in South Africa’s National Mental Health Policy, this doctoral work also investigated challenges and ways forward for addressing lack of intersectoral collaboration as a key structural barrier to scale up. Methods: Firstly, a systematic literature review of feasibility and acceptability of psychosocial interventions for schizophrenia from LMIC was conducted. Factors promoting acceptability and feasibility were identified through a meta-synthesis of qualitative and quantitative data. Secondly, in-depth semi-structured interviews were conducted with 9 service users with schizophrenia and their 9 caregivers. Thematic analysis was used to understand their perceptions of illness and specific needs. These two aspects of formative research informed the development of the intervention and corresponding materials (Training Manual, Facilitator Guide). Thirdly, a preliminary pilot group with 6 members was run between September and December 2013 with 2 ASW facilitators. For an initial formative evaluation, in-depth qualitative interviews with group members were conducted at baseline, midpoint and endpoint (18 interviews in total). Endpoint interviews were also conducted with facilitators. Framework analysis was used to identify evidence of acceptability and feasiblity. Fourthly, in-depth qualitative interviews were conducted with 24 representatives from different sectors involved in the provision of PSR (Department of Health, Department of Social Development, Non-Governmental Organisations). Framework analysis was conducted to investigate challenges to intersectoral collaboration and potential for addressing these challenges. Results: The systematic review and qualitative research with service users and caregivers produced recommendations for improving acceptability and feasibility including: using materials appropriate for participants educational level and language; understanding traditional explanatory models of illness and significance of religion as a coping strategy; and addressing specific identified needs (e.g. for psychoeducation, adherence support, coping skills for conflict, coping skills for stigma and discrimination, provision of income generation). In the qualitative process evaluation service users and facilitators reported improvements in illness knowledge, self-care and reduced social isolation. Recommendations for improvement of the intervention included further mobilisation of families and caregivers; allocation of more facilitator and supervisor time to allow for home visits; and involvement of a partner organisation to further develop the income generation aspect of the intervention. The investigation into intersectoral collaboration for PSR provided recommendations for improving this working strategy including: role clarification and building capacity to meet these roles within each sector; providing for a focal person to coordinate collaboration and fulfil a case management role for individual patients; improving communication and referrals between sectors; and ensuring appropriate resource allocation for PSR at community level. Conclusion: The contextually appropriate intervention described in this work shows evidence of acceptability and feasible delivery by ASWs in a task-shared model. The intervention warrants further testing at a larger scale, including with objective measures of symptoms, disability and functioning. This may be achieved through further piloting and a randomised controlled trial. However, for this to be possible, crucial barriers to feasibility identified in the study need to be addressed. These relate primarily to appropriate allocation of resources for the provision of a PSR service, in particular to enable appropriate inputs of ASW and supervisor time for more comprehensive support of service users and mobilisation of families. This will rely on appropriate intersectoral collaboration and leverage of existing resources, which will necessitate considerable political will.