Involvement of people with schizophrenia in decision-making in rural Ethiopia: a qualitative study

BACKGROUND: The involvement of people with psychosocial disabilities in decision-making is a fundamental component of a person-centred and recovery-oriented model of care, but there has been little investigation of this approach in low- and middle-income countries. The aim of this study was to explore the involvement of people with schizophrenia in decision-making relating to their care in rural Ethiopia. METHODS: A qualitative study was conducted in rural Ethiopia as part of the Rehabilitation Intervention for people with Schizophrenia in Ethiopia (RISE) project, involving two focus group discussions (n = 10) with community-based rehabilitation workers, and 18 in-depth interviews with people with schizophrenia, caregivers, health officers, supervisors and a community-based rehabilitation worker. Thematic analysis was used to examine major themes related to involvement in decision-making in this specific setting. RESULTS: Involvement of people with schizophrenia in decision-making in this rural Ethiopian setting was limited and coercive practices were evident. People with schizophrenia tended to be consulted about their care only when they were considered clinically ‘recovered’. Caregivers typically had a prominent role in decision-making, but they also acquiesced to the views of health care professionals. People with schizophrenia and caregivers were often unable to execute their desired choice due to inaccessible and unaffordable treatment. CONCLUSIONS: Community-based rehabilitation, as a model of care, may give opportunities for involvement of people with schizophrenia in decision-making. In order to increase involvement of people with schizophrenia in rural Ethiopia there needs to be greater empowerment of service users, wider availability of treatment choices and a facilitating policy environment. Further studies are needed to explore concepts of person-centred care and recovery across cultural settings. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s12992-018-0403-4) contains supplementary material, which is available to authorized users.