Abstract
BackgroundThe 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.MethodsThe 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).ResultsThe 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.ConclusionsThe 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.
Highlights
The involvement of service users and their caregivers at all levels of the mental health system has become a core policy in many countries across the world [1,2,3]
Service user and caregiver involvement is defined as the active involvement by service users, caregivers and their representatives in decision-making within mental health system in a range of activities including, policy making, planning, service development and delivery, monitoring and evaluation or quality assurance, research, training and education, peer support and case management, and advocacy within the health system starting from their expertise gained from experience [1]
Setting This study was conducted as part of the ‘Emerging mental health systems in low- and middle-income countries’(Emerald) project, which investigated the health system requirements for successful improvement of integrated mental health care in six low-and-middle income countries (LMICs)(Ethiopia, India, Nepal, Nigeria, South Africa and Uganda) [42, 43]
Summary
The involvement of service users and their caregivers at all levels of the mental health system has become a core policy in many countries across the world [1,2,3]. The involvement of service user and caregiver can take place at multiple levels: the micro-level (e.g. in individual care decision-making, planning and management), meso-level (e.g. in local service planning, monitoring and evaluation, advocacy, training and recruitment of staff, input into guidelines), and macro-level (e.g. policy making, national level planning and advocacy) [1, 5, 6]. There is explicit international policy direction from the World Health Organization for national mental health systems to empower and involve service users in mental health system strengthening [7, 8]. The involvement of service users and caregivers is recommended as a strategy to strengthen health systems and scale up quality mental healthcare equitably, in low-and-middle-income countries.
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
Free) 
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a call
