Browsing by Author "Abayneh Sisay"

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    Developing Service User and Caregiver Involvement in Mental Health System Strengthening in Ethiopia
    (Addis Abeba University, 2021-05) Abayneh Sisay; Hanlon Charlotte; Lempp Heidi
    Background: Service user and caregiver involvement has become an expectation in all aspects of the mental health system, including in policy, planning, service delivery, quality improvement, research and education around the world. Service user involvement is particularly promoted as a strategy to scale-up quality mental healthcare service in low-and-middle-income countries (LMICs). However, little is known about actual involvement experiences and how best to involve service users and caregiversin mental health systems. No study of involvement has been conducted in Ethiopia. Hence, this study aimed to achieve the following objectives. General objective: To develop, pilot and evaluate a model of service user/caregiver involvement in mental health system strengthening in Ethiopia The specific objectives of the study were to: • explore the experiences, perceived barriersand facilitators regarding service user andcaregiver involvement in mental health system strengthening. develop an acceptable, sustainable and feasible Theory of Change model of service userand caregiver involvement in the expanding mental health system. equip service users and health professionals for greater involvement in mental health system strengthening. pilot the feasibility and acceptability of a co-developed model of service user and caregiver involvement in mental health system strengthening. Methods: A predominantly qualitative approach was used, which was conducted in three phases.The study was situated within participatory approaches informed by a critical social theoreticalperspectives and social-ecological system theory. The thesis consists of 5 articles, which have been published or are about to be submitted for publication.Phase 1 provides the context for the thesis, which was a formative qualitative study conducted to explore the experiences of involvement, barriers to, facilitators and capacity building needs forgreater involvement from the perspective of key stakeholders (Paper 1). In the study, 39 semistructured interviewswerecarriedoutwithpurposivelyselectedserviceusers(n=13),caregivers(n=10), heads of primary care facilities (n=8) and policy makers/ planners /service developers(n=8). Thematic analysis was applied. In Phase 2, a Theory of Change(ToC) model was developed in iterative participatory workshops conducted in (i) Addis Ababa with purposively selected psychiatrists (n=4) and multidisciplinary researchers (n=3), and (ii) a rural district in south-central Ethiopia (Sodo) with community stakeholders (n=24). Information from the workshops (provisional ToC maps, minutes, audio recordings), and inputs from Paper1 were triangulated to develop the detailed ToC map. ThisToC map was further refined with written feedback and further consultative meetings with the research team (n=6) and community stakeholders (n=35) (Paper 2). Based on findings from paper 1 and 2, an empowerment training programme was developed, delivered and evaluated for acceptability,feasibilityand preliminary impacts using a mixed-methods design in Paper 3(Chapter 7). The training was delivered separately for service users (n=12) and caregivers(n=12), and health professionals (n=18). The quantitative data consisted of process data, satisfaction questionnaires, and a retrospective pre-test survey. Qualitative data included exit andfollow-up in-depth interviews with service users and caregivers. Descriptive statistics wereperformed for quantitative data, and qualitative data were analysed using a thematic analysis approach. The findings were integrated through triangulation for convergentthemesfollowing analysis. Phase 3 involved Participatory Action Research (PAR) implementation strategy development,piloting the ToC model and a case study of the piloting process and participants‘ experiences ofinvolvement. Accordingly, a PAR protocol was developed to guide the ToC modelimplementation process (Paper 4) and the ToC model was piloted using PAR in three stages,each with iterative activities of plan, act, observe and reflect. Two stakeholder groups, aResearch Advisory Group (RAG) and Research Participant Group (RPG), were established andcollaborated in all stages of the PAR process. Data collection involved process documentation ofmeetings and activities: attendances, workshop minutes, discussion outputs, and reflective notes,participatory observation of sessions, and in-depth interviews with service users key stakeholders in the contexts of low resource setting.