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

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.

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Development of programme theory for integration of service user and caregiver involvement in mental health system strengthening: protocol for realist systematic review

International Journal of Mental Health Systems ◽

10.1186/s13033-018-0220-4 ◽

2018 ◽

Vol 12 (1) ◽

Cited By ~ 4

Author(s):

Sisay Abayneh ◽

Heidi Lempp ◽

Jill Manthorpe ◽

Charlotte Hanlon

Keyword(s):

Mental Health ◽

Systematic Review ◽

Health System ◽

Mental Health System ◽

Service User ◽

Health System Strengthening ◽

Programme Theory ◽

Caregiver Involvement

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

Epidemiology and Psychiatric Sciences ◽

10.1017/s2045796017000634 ◽

2017 ◽

Vol 27 (1) ◽

pp. 29-39 ◽

Cited By ~ 21

Author(s):

H. Lempp ◽

S. Abayneh ◽

D. Gurung ◽

L. Kola ◽

J. Abdulmalik ◽

...

Keyword(s):

Mental Health ◽

Health System ◽

Mental Health System ◽

Service User ◽

Health System Strengthening ◽

Service Users ◽

Middle Income ◽

Middle Income Countries ◽

Cross Country ◽

Caregiver Involvement

Aims.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.Methods.A cross-country qualitative study was conducted, interviewing 83 stakeholders of mental health services.Results.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.Conclusion.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.

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