Developing a Theory of Change model of service user and caregiver involvement in mental health system strengthening in primary health care in rural Ethiopia

Abstract

Abstract 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.