Abstract
BackgroundThe 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.MethodsA 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.ResultsInvolvement 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.ConclusionsCommunity-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.
Highlights
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
Setting This study was conducted as part of the RISE [41, 42] 12-month pilot study [44] in the Sodo district of Ethiopia, which is the setting of the PRogramme for Improving Mental health care (PRIME) programme [37, 38]
How decisions are made about care Communication and role of community-based rehabilitation (CBR) workers Most CBR workers and supervisors described how they advise people with schizophrenia on the available treatments, their advantages and side effects (Additional file 1)
Summary
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. Involvement in decision-making is considered to be a fundamental component of person-centred and recoveryoriented models of care [11] These models rest on the assumption that care should respect the needs, experiences and rights of the individual with a mental health problem [12, 13]. As such, both models are grounded in the autonomy-focused value systems of the Western countries where they were developed. The cross-cultural applicability of these approaches and the assumptions upon which they rest have been questioned [14]
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