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Background It 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. Methods Thirty 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. Results All 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. Conclusion As 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.

Background Increased 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. Methods REducing 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. Results Twelve 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. Conclusions We 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.

Background Ethiopia Population-based HIV Impact Assessment findings showed that in Addis Ababa, only 65.2% of people living with HIV (PLHIV) know their status. We present the enhanced HIV/AIDS data management and systematic monitoring experience in Addis Ababa City Administration Health Bureau (AACAHB). Methods AACAHB established a command-post with leadership and technical team members from the health bureau, 10 sub-city health offices, and non-governmental stakeholders. The command-post improved governance, standardized HIV program implementation, and established accountability mechanism. A web-based database was established at each health facility, sub-city, and AACAHB level. Performance was scored (green, ≥75%; yellow, 50–74%; red, < 50%). The command-post reviewed performance on weekly basis. A mentorship team provided a weekly site-level support at underperforming public and private health facilities. At facility level, quality of data on recording tools such as registers, and individual medical records were maintained through continued review, feedback mechanisms and regular consistency check of data. Percentage and 95% confidence interval were computed to compare the improvement in program performance over time. Results After 6 months of intervention period, the monthly New HIV case finding in 47 health facilities increased from 422 to 734 (1.7 times) and treatment initiation increased from 302 to 616 (2 times). After 6 months, the aggregate scoring for HIV testing at city level improved from yellow to green, HIV case finding improved from red to green, and treatment initiation improved from red to yellow. An increasing trend was noted in HIV positive case finding with statistically significant improvement from 43.4% [95% Confidence Interval: 40.23–46.59%] in May 2019 to 74.9% [95% Confidence Interval: 72.03–77.6%] in September 2019. Similarly, significant improvement was recorded for new HIV treatment from 30.9% [95% Confidence Interval: 28.01–33.94%] in May 2019 to 62.5% [95% Confidence Interval: 59.38–65.6%] in September 2019. Conclusions Regular data driven HIV program review was institutionalized at city, sub-city and health facility levels which further improved HIV program monitoring and performance. The performance of HIV case finding and treatment initiation improved significantly via using intensified monitoring, data driven performance review, targeted site-level support based on the gap, and standardized approaches.

Background Little 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. Methods We 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. Results The 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. Conclusions This 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.

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.

Background The involvement of service users and caregivers is recommended as a strategy to strengthen health systems and scale up quality mental healthcare equitably, particularly in low-and-middle-income countries. Service user and caregiver involvement is complex, and its meaningful implementation seems to be a worldwide challenge. Theory of Change (ToC) has been recommended to guide the development, implementation and evaluation of such complex interventions. This paper aims to describe a ToC model for service user and caregiver involvement in a primary mental health care in rural Ethiopia. Methods The ToC was developed in two 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 a previous qualitative study 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). Results The experiential knowledge and professional expertise of ToC participants combined to produce a ToC map that incorporated key components (community, health organisation, service user and caregiver), necessary interventions, preconditions, assumptions and indicators towards the long-term outcomes. The participatory nature of ToC by itself 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. Conclusions The ToC workshops provided an opportunity to co-produce a ToC for service user and caregiver involvement in mental health system strengthening linked to the planned model for scale-up of mental health care in Ethiopia. The next steps will be to pilot a multi-faceted intervention based on the ToC and link locally generated evidence to published evidence and theories to refine the ToC for broader transferability to other mental health settings.

Background There is international recognition of the need for service user and caregiver involvement in mental health system strengthening. However, little is known about how best to integrate this approach into the mental healthcare system; what works to advance involvement, under what conditions, how and when does involvement bring added value, and how can it work in resource-poor settings in low and middle-income countries. Objective To describe the methodology for a realist systematic review protocol to synthesise the evidence to explain the contexts, outcomes, and underlying mechanisms for involvement of service users with severe mental health problems and their caregivers in mental healthcare policy-making and planning, advocacy, service development, monitoring and improvement. Methods/designs The proposed realist systematic review will involve five steps: (i) clarifying the review scope, (ii) a systematic search for evidence, (iii) evidence appraisal and data extraction, (iv) data analysis, (v) synthesis of evidence and formation of revised programme theory. Inputs from a formative qualitative study, consultative Theory of Change meetings with key stakeholder groups, and scoping reviews will be used to identify candidate theory/theories that will guide the selection, appraisal and analysis of studies, and refine the Theory of Change model that will be piloted and evaluated. Synthesis of data will be undertaken using realist logic, constant comparison and thematic analysis. In a consultative meeting with stakeholders the Theory of Change model will then be situated with respect to relevant programme theories and adapted to incorporate the synthesized evidence of relevance to the local context. The finalized Theory of Change model will be piloted and evaluated in a primary health care setting in rural Ethiopia. Discussion Realist review methodology has not been applied to the area of mental health service user involvement in low- and middle-income country settings. In this protocol, we describe how this contextualized approach will be applied to identify and refine a theory-driven and transferable model of involvement of service users, embedded in ongoing work in Ethiopia. Systematic review registration PROSPERO CRD42018084595

Background Evidence from high- and middle-income countries indicates that psychological interventions (PSIs) can improve the well-being of people with bipolar disorder. However, there is no evidence from low-income countries. Cultural and contextual adaptation is recommended to ensure that PSIs are feasible and acceptable when transferred to new settings, and to maximise effectiveness. Aims To develop a manualised PSI for people with bipolar disorder in rural Ethiopia. Method We used the Medical Research Council framework for the development and evaluation of complex interventions and integrated a participatory theory-of-change (ToC) approach. We conducted a mental health expert workshop (n = 12), four independent ToC workshops and a final workshop with all participants. The four independent ToC workshops comprised people with bipolar disorder and caregivers (n = 19), male community leaders (n = 8), female community leaders (n = 11) and primary care workers (n = 21). Results During the workshops, participants collaborated on the development of a ToC roadmap to achieve the shared goal of improved quality of life and reduced family burden for people with bipolar disorder. The developed PSI had five sessions: needs assessment and goal-setting; psychoeducation about bipolar disorder and its causes; treatment; promotion of well-being, including sleep hygiene and problem-solving techniques; and behavioural techniques to reduce anxiety and prevent relapse. Participants suggested that the intervention sessions be linked with patients’ monthly scheduled healthcare follow-ups, to reduce economic barriers to access. Conclusions We developed a contextually appropriate PSI for people with bipolar disorder in rural Ethiopia. This intervention will now be piloted for feasibility and acceptability before its wider implementation.

Household water chlorination has been shown to reduce diarrhea incidence among people living with Human Immunodeficiency Virus (PLHIV). Some HIV programs in Ethiopia previously provided a socially marketed chlorination product (brand name WuhaAgar) to prevent diarrhea. To evaluate the program, we compared WuhaAgar use and water treatment practices between 795 clients from 20 antiretroviral therapy (ART) clinics and 795 community members matched by age, sex, and neighborhood. Overall, 19% of study participants reported water treatment with WuhaAgar. Being an ART clinic client was associated with reported treatment of drinking water (matched odds ratios (mOR): 3.8, 95% confidence interval (CI): 2.9–5.0), reported current water treatment with WuhaAgar (mOR: 5.5, 95% CI 3.9–7.7), and bottles of WuhaAgar observed in the home (mOR: 8.8, 95% CI 5.4–14.3). Being an ART clinic client was also associated with reported diarrhea among respondents (mOR: 4.8, 95% CI 2.9–7.9) and household members (mOR:2.8, 95% CI: 1.9–4.2) in the two weeks preceding the survey. Results suggest that promoting and distributing water chlorination products in ART clinics was effective in increasing access to and use of water treatment products among PLHIV. The positive association between ART clinic attendees and diarrhea likely resulted from the immunocompromised status of ART clinic clients.

Social contact refers to the facilitation of connection and interactions between people with and without mental health conditions. It can be achieved, for example, through people sharing their lived experience of mental health conditions, which is an effective strategy for stigma reduction. Meaningful involvement of people with lived experience (PWLE) in leading and co-leading anti-stigma interventions can/may promote autonomy and resilience. Our paper aimed to explore how PWLE have been involved in research and anti-stigma interventions to improve effective means of involving PWLE in stigma reduction activities in LMICs. A qualitative collective case study design was adopted. Case studies from four LMICs (China, Ethiopia, India and Nepal) are summarized, briefly reflecting on the background of the work, alongside anticipated and experienced challenges, strategies to overcome these, and recommendations for future work. We found that the involvement of PWLEs in stigma reduction is commonly a new concept in LMIC. Experienced and anticipated challenges were similar, such as identifying suitable persons to engage in the work and sustaining their involvement. Such an approach can be difficult because PWLE might be apprehensive about the negative consequences of disclosure. In many case studies, we found that long-standing professional connectedness, continued encouragement, information sharing, debriefing and support helped the participants’ involvement. We recommend that confidentiality of the individual, cultural norms and family concerns be prioritized and respected during the implementation. Taking into account socio-cultural contextual factors, it is possible to directly involve PWLEs in social contact-based anti-stigma interventions.