Service user involvement in mental health system strengthening in a rural African setting: qualitative study

Abstract

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.Electronic supplementary materialThe online version of this article (doi:10.1186/s12888-017-1352-9) contains supplementary material, which is available to authorized users.

Exploring the potential use of patient and public involvement to strengthen Indonesian mental health care for people with psychosis: A qualitative exploration of the views of service users and carers

“…17,18 Despite the ubiquity of involvement rhetoric within policy and practice ideologies across the world, current evidence suggests implementation remains far from optimal and service user and carer isolation and dissatisfaction persist. 10,[19][20][21][22][23][24] In a recent commentary, it was argued that true collaboration between people with mental health diagnoses and researchers, policy makers and health professionals cannot happen in environments which continue to perpetuate hierarchies and power imbalances albeit in a less transparent form. 25 Often such imbalances are sustained by macro-level factors such as the legacy of prior mental health policy and historical practice, legal frameworks and organizational cultures often not targeted or considered by PPI interventions.…”

Mental Health in low-and middle income countries (LMICs): Going beyond the need for funding

“…An important contributing factor to mental health issues in LMICs is the discrimination against people with mental illnesses. They are labelled, exempted and even abused [23]. Although 70% of people affected by mental illness experience stigma and discrimination in the UK, this is even higher in LMICs where awareness of mental illness is low [24].…”

Service user and caregiver involvement in mental health system strengthening in low- and middle-income countries: a cross-country qualitative study

“…Recent situational analyses have been published from Emerald project countries describing the system and clinical level characteristics and resources for integrating mental health care into primary care in the study sites (Semrau et al 2015;Abayneh et al 2017;Mugisha et al 2017), while service users' and caregivers' involvement in mental health strengthening are reported by Semrau et al in this edition, and in the web appendices to this paper.…”