Developing Service User and Caregiver Involvement in Mental Health System Strengthening in Ethiopia

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Addis Abeba University


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 barriers and facilitators regarding service user and caregiver involvement in mental health system strengthening.  develop an acceptable, sustainable and feasible Theory of Change model of service user and 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 theoretical perspectives 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 for greater involvement from the perspective of key stakeholders (Paper 1). In the study, 39 semistructured interviews were carried out with purposively selected service users (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. This ToC 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, feasibility and 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 and follow-up in-depth interviews with service users and caregivers. Descriptive statistics were performed for quantitative data, and qualitative data were analysed using a thematic analysis approach. The findings were integrated through triangulation for convergent themes following 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 of involvement. Accordingly, a PAR protocol was developed to guide the ToC model implementation 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, a Research Advisory Group (RAG) and Research Participant Group (RPG), were established and collaborated in all stages of the PAR process. Data collection involved process documentation of meetings and activities: attendances, workshop minutes, discussion outputs, and reflective notes, participatory observation of sessions, and in-depth interviews with service users (n=6), caregivers (n=4) and health professionals (n=2) involved throughout the PAR process. Descriptive analysis was used for process data, and thematic analysis was used for qualitative data. Triangulation and synthesis of findings was carried out to develop the case study (Paper 5Chapter 8). Results: The formative qualitative study showed that the concept of service user involvement is new within the Ethiopian mental health system and that service user participants had little direct involvement in mental health systems strengthening. Several potential benefits were identified, included were improved appropriateness and quality of services, and greater protection against mistreatment and promotion of respect for service users. This study identified key multilevel barriers and facilitators to effective involvement, and many areas of capacity building needs for greater involvement. Stigma was considered to be a pervasive barrier, operating within the health system, the local community and individuals. Low recognition of the potential contribution of service users seemed linked to limited empowerment and mobilization of service users. There was a strong need for awareness-raising and training to equip service users, caregivers, service providers and local community for involvement. The participatory ToC model co-produced described the causal pathways for greater service user involvement with key components (community, health organisation, service user and caregiver), interventions, preconditions, assumptions and indicators for each component along the pathway to the long-term outcomes and impact. The participatory nature of ToC process raised awareness of the possibilities for servicer user and caregiver involvement, promoted co-working and stimulated immediate commitments to mobilise support for a grass roots service user organization. The empowerment training content, delivery process and standard of the training program met participants‘ expectations, improved positive gains in understanding about metal illness, stigma, service-user involvement, and human rights. The training had positive impacts, including increased self-confidence, sense of empowerment, social benefits, and perceived therapeutic benefits. Through active collaboration and involvement the stakeholder groups identified their top research priorities considered as significant problems in their specific settings (particularly the need for public awareness-raising and addressing stigma and discrimination) and developed intervention programmes, action plans and initiated actions that could resolve some of these problems. Key mechanisms used for inclusive participation included capacity building and bringing together diverse stakeholders, anchoring the study in established strong community involvement structures, and making use of participatory strategies and activities during the PAR process. The case study about participants‘ experiences of involvement in PAR identified and explained about: (i) expectations and motivation, (ii) experiences of the dynamics of the PAR process, (iii) perceived impacts of involvement in the PAR process, and (iv) implementation challenges and future directions. Conclusions: Service user and caregiver involvement in mental health system strengthening is a complex process, which is affected by multilevel factors that demands interventions that recognize this complexity.This thesis shows that effective involvement could be achieved by empowering key stakeholders for greater involvement. PAR can be a feasible and acceptable approach for empowerment and collaborative engagement of a range of stakeholders in mental health system strengthening. Combining ToC with a PAR approach can provide a more inclusive active involvement model of stakeholders including service users and caregivers. Embedding effective service user and caregiver involvement can be hindered with lack of strategic enabling regulatory infrastructure within the mental health system. Implications: The findings of this thesis can be of practical relevance to researchers and those working in health care settings to develop service user and caregiver involvement in mental health system strengthening. It contributes theoretical understanding for future research and provides practical knowledge for application of participatory action oriented approaches about how to develop participatory models and actively involve key stakeholders in the contexts of low resource setting.



Mental Health System