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Participatory action research to pilot a model of mental health service user involvement in an Ethiopian rural primary healthcare setting: study protocol.

ABSTRACT: Background:Involvement of service-users at all levels of the mental health system is a policy imperative in many countries internationally. However, putting policy into practice seems complex; little is known about how best to involve service users and efforts are often criticized for being tokenistic. In low-and-middle income countries, less attention has been given to the roles of service users within mental health systems. The proposed study is part of a larger project intended to develop service-user involvement in mental health system strengthening in Ethiopia. A Theory of Change (ToC) model has already been developed through a participatory approach. This study protocol aims to describe the theoretical background and methods to pilot this model using participatory action research (PAR) and explore participants' experience of involvement. Methods:The proposed study will apply a PAR approach situated in critical social theory and conduct a phenomenological case study to find out participants' experience of involvement. This will be conducted in three stages. The focus of Stage 1 will be to(i) establish a Research Advisory Group (RAG), and Research Participant Group (RPG) at district and primary healthcare facility levels, respectively, and (ii) identify and prioritize potential areas of concern for involvement in the domains of advocacy, service planning and development, monitoring and improving service quality. In Stage 2, we will work with the RPG to develop a plan of action for the selected area. Stage 3 will aim to assist the RPG to implement and evaluate the plan of action. Process indicators and observation will be combined with in-depth interviews with participants to elicit their experiences of involvement. Thematic content analysis will be used. Discussion:The participatory approach to mental health service user involvement in health system strengthening employed by this study will support the implementation of solutions through locally relevant and contextualized actions. Findings from this study will contribute to the body of knowledge towards understanding the complexity of implementation of service user involvement and refine the ToC model for transferability to similar settings.

SUBMITTER: Abayneh S

PROVIDER: S-EPMC6951014 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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Participatory action research to pilot a model of mental health service user involvement in an Ethiopian rural primary healthcare setting: study protocol.

Abayneh Sisay S Lempp Heidi H Hanlon Charlotte C

Research involvement and engagement 20200108

<h4>Background</h4>Involvement of service-users at all levels of the mental health system is a policy imperative in many countries internationally. However, putting policy into practice seems complex; little is known about how best to involve service users and efforts are often criticized for being tokenistic. In low-and-middle income countries, less attention has been given to the roles of service users within mental health systems. The proposed study is part of a larger project intended to dev ...[more]

PMID: 31934350

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Project description:BackgroundLittle is known about actual involvement or how to achieve service user and caregiver in mental health systems strengthening in low-and middle-income countries. This study describes the processes and explores involvement experiences of participants in a pilot study of a new model of service user involvement in mental health system strengthening in a rural district in southern Ethiopia.MethodsWe applied a case study design using participatory action research (PAR). The PAR process comprised of 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 the PAR process. Data collection involved process documentation of meetings and activities: attendances, workshop minutes, discussion outputs, reflective notes, participatory observation of sessions, and in-depth interviews with 12 RPG members. We analyzed the process data descriptively. Thematic analysis was used for qualitative data. Triangulation and synthesis of findings was carried out to develop the case study.ResultsThe stakeholder groups identified their top research priorities, developed an intervention and action plan and made a public presentation of preliminary findings. 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. Four themes were developed about experiences of involvement in PAR: (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.ConclusionsThis case study demonstrated the feasibility and acceptability of implementing a complex model of service-user involvement in mental health system strengthening in a resource constrained setting. More needs to be done to embed service-user involvement into routines of the primary healthcare system, alongside sustained support and strengthening multi-stakeholder collaboration at multiple levels.

Project description:BackgroundIt is essential to involve service users in efforts to expand access to mental health care in integrated primary care settings in low- and middle-income countries (LMICs). However, there is little evidence from LMICs to guide this process. The aim of this study was to explore barriers to, and facilitators of, service user/caregiver involvement in rural Ethiopia to inform the development of a scalable approach.MethodsThirty nine semi-structured interviews were carried out with purposively selected mental health service users (n = 13), caregivers (n = 10), heads of primary care facilities (n = 8) and policy makers/planners/service developers (n = 8). The interviews were audio-recorded and transcribed in Amharic, and translated into English. Thematic analysis was applied.ResultsAll groups of participants supported service user and caregiver involvement in mental health system strengthening. Potential benefits were identified as (i) improved appropriateness and quality of services, and (ii) greater protection against mistreatment and promotion of respect for service users. However, hardly any respondents had prior experience of service user involvement. Stigma was considered to be a pervasive barrier, operating within the health system, the local community and individuals. Competing priorities of service users included the need to obtain adequate individual care and to work for survival. Low recognition of the potential contribution of service users seemed linked to limited empowerment and mobilization of service users. Potential health system facilitators included a culture of community oversight of primary care services. All groups of respondents identified a need for awareness-raising and training to equip service users, caregivers, service providers and local community for involvement. Empowerment at the level of individual service users (information about mental health conditions, care and rights) and the group level (for advocacy and representation) were considered essential, alongside improved, accessible mental health care and livelihood interventions.ConclusionAs Ethiopia increases access to mental health care, a fundamental barrier to service user involvement is beginning to be addressed. Our study identified further barriers that need to be tackled, including a supportive political climate, and receptiveness amongst stakeholders. The findings will inform the development of a model of service user involvement, which will be piloted and evaluated.

Project description:BackgroundIncreased service user involvement is recommended to improve weak mental health systems in low-and middle-income countries (LMICs). However, involvement is rarely implemented and interventions to support involvement are sparse. In this study we evaluated the acceptability, feasibility and perceived outcomes of an empowerment and training program for service users and health professionals to facilitate service user involvement in mental health system strengthening in rural Ethiopia.MethodsREducing Stigma among HealthcAreProvidErs (RESHAPE) is a training curriculum for service users, their caregivers and aspirational health workers, which uses PhotoVoice methodology, to prepare them in participation of mental health systems strengthening in LMICs. We delivered the RESHAPE training augmented with empowerment content developed in Ethiopia. The interactive face-to-face training was delivered to service users and caregivers (over 10 days), and health professionals (1 day) separately. The study was an uncontrolled, convergent mixed-methods design. The quantitative data consisted of process data, satisfaction questionnaire, and a retrospective pre-test survey. Qualitative data included exit and follow-up in-depth interviews with the service users. Descriptive statistics were performed for quantitative data, and qualitative data were thematically analysed. The findings were integrated through triangulation for convergent themes following analysis.ResultsTwelve service users, 12 caregivers and 18 health professionals were enrolled, and completed the training. Participants valued the content and delivery process; the standard of the training program met their expectations and participation led to positive gains in understanding about mental illness, stigma, service-user involvement and human rights. The qualitative findings identified positive impacts, including increased self-confidence, sense of empowerment, social - and perceived therapeutic benefits.ConclusionsWe found that the RESHAPE training with added content for Ethiopia, delivered using the PhotoVoice methodology, is feasible, acceptable and of value to develop and implement training programmes which can empower service users to be involved in mental health system strengthening in this setting. Further study to assess the impact on health systems strengthening is warranted.

Project description:INTRODUCTION:User involvement has become a growing importance in healthcare. The United Nations state that adolescents have a right to be heard, and user involvement in healthcare is a legal right in many countries. Some research provides an insight into the field of user involvement in somatic and mental healthcare for adults, but little is known about user involvement in adolescents' mental healthcare, and no overview of the existing research evidence exists. METHODS AND ANALYSIS:The aim of this systematic review is to provide an overview of existing research reporting on experiences with and the effectiveness and safety issues associated with user involvement for adolescents' mental healthcare at the individual and organisational level. A systematic literature search and assessment of published research in the field of user involvement in adolescents' mental healthcare will be carried out. Established guidelines will be used for data extraction (Cochrane Collaboration guidelines, Strengthening the Reporting of Observational studies in Epidemiology and Critical Appraisal Skills Programme (CASP)), critical appraisal (Cochrane Collaboration guidelines and Pragmatic-Explanatory Continuum Indicator Summary) and reporting of results (Preferred Reporting Items for Systematic reviews and Meta-Analyses, Consolidated Standards of Reporting Trials and CASP). Confidence in the research evidence will be assessed using the Grading of Recommendations Assessment, Development and Evaluation approach. Adolescents are included as coresearchers for the planning and carrying out of this systematic review. This systematic review will provide an overview of the existing research literature and thereby fill a knowledge gap. It may provide various stakeholders, including decision-makers, professionals, individuals and their families, with an overview of existing knowledge in an underexplored field of research. ETHICS AND DISSEMINATION:Ethics approval is not required for this systematic review as we are not collecting primary data. The results will be published in a peer-reviewed journal and at conference presentations and will be shared with stakeholder groups.

Project description:BackgroundIncreasing service user and carer involvement in mental health care planning is a key healthcare priority but one that is difficult to achieve in practice. To better understand and measure user and carer involvement, it is crucial to have measurement questionnaires that are both psychometrically robust and acceptable to the end user.MethodsWe conducted a systematic review using the terms "care plan$," "mental health," "user perspective$," and "user participation" and their linguistic variants as search terms. Databases were searched from inception to November 2012, with an update search at the end of September 2014. We included any articles that described the development, validation or use of a user and/or carer-reported outcome measures of involvement in mental health care planning. We assessed the psychometric quality of each instrument using the "Evaluating the Measurement of Patient-Reported Outcomes" (EMPRO) criteria. Acceptability of each instrument was assessed using novel criteria developed in consultation with a mental health service user and carer consultation group.ResultsWe identified eleven papers describing the use, development, and/or validation of nine user/carer-reported outcome measures. Psychometric properties were sparsely reported and the questionnaires met few service user/carer-nominated attributes for acceptability. Where reported, basic psychometric statistics were of good quality, indicating that some measures may perform well if subjected to more rigorous psychometric tests. The majority were deemed to be too long for use in practice.DiscussionMultiple instruments are available to measure user/carer involvement in mental health care planning but are either of poor quality or poorly described. Existing measures cannot be considered psychometrically robust by modern standards, and cannot currently be recommended for use. Our review has identified an important knowledge gap, and an urgent need to develop new user and carer measures of care-planning involvement.

Dataset Information

Participatory action research to pilot a model of mental health service user involvement in an Ethiopian rural primary healthcare setting: study protocol.

Publications

Participatory action research to pilot a model of mental health service user involvement in an Ethiopian rural primary healthcare setting: study protocol.

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