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

S Abayneh,A Alem,M Semrau,L Kola,D Gurung,H Lempp,S Evans-Lacko,C Hanlon,J Abdulmalik,G Thornicroft

doi:10.1017/s2045796017000634

Abstract

The aims of this paper are to: (i) explore the experiences of involvement of mental health service users, their caregivers, mental health centre heads and policy makers in mental health system strengthening in three low- and middle-income countries (LMICs) (Ethiopia, Nepal and Nigeria); (ii) analyse the potential benefits and barriers of such involvement; and (iii) identify strategies required to achieve greater service user and caregiver participation. A cross-country qualitative study was conducted, interviewing 83 stakeholders of mental health services. Our analysis showed that service user and caregiver involvement in the health system strengthening process was an alien concept for most participants. They reported very limited access to direct participation. Stigma and poverty were described as the main barriers for involvement. Several strategies were identified by participants to overcome existing hurdles to facilitate service user and caregiver involvement in the mental health system strengthening process, such as support to access treatment, mental health promotion and empowerment of service users. This study suggests that capacity building for service users, and strengthening of user groups would equip them to contribute meaningfully to policy development from informed perspectives. Involvement of service users and their caregivers in mental health decision-making is still in its infancy in LMICs. Effective strategies are required to overcome existing barriers, for example making funding more widely available for Ph.D. studies in participatory research with service users and caregivers to develop, implement and evaluate approaches to involvement that are locally and culturally acceptable in LMICs.

Highlights

For many years, people with severe mental illness have been considered to be chronically disabled, unable to make responsible decisions, and limited in their capacity to engage in productive activities
Under each of the four main themes illustrations of 2–3 subthemes are presented
Our analysis showed that service user and caregiver involvement in the health system strengthening process may have been seen as a rather foreign concept for most participants

Summary

Introduction

People with severe mental illness have been considered to be chronically disabled, unable to make responsible decisions, and limited in their capacity to engage in productive activities. Such negative views have contributed to the social exclusion and stigmatisation that are commonly experienced (Chamberlin, 2005; Corrigan et al 2012; Mizock et al 2014). The introduction of new care models in health, e.g. the person-centred approach, the recovery model, and shared-decision-making, has led service users and their caregivers to take a greater role in shaping the service they receive (Wallcraft et al 2011; Storm & Edwards, 2013).

Results

Discussion

Conclusion