Lay community mental health workers (cadres) in Indonesian health services: A qualitative exploration of the views of people with mental health problems and their families

Introduction In community-based mental health services, lay workers recruited and trained to support mental health programs, known as mental health cadres, have an important role in supporting the care of families and people with mental disorders. This study aims to explore the experiences of people with mental disorders and their families about the role of mental health cadres in improving mental health and caring for people with mental disorders. Methods This study employed a qualitative descriptive design for data gathering. Focus groups were conducted between August 2020 and January 2021 with 19 people with mental health difficulties (people diagnosed with schizophrenia) and 25 family members who are the primary caregivers of people with mental disorders from three provinces in Indonesia: West Java, East Java, and Aceh. Participants were purposively sampled with inclusion and exclusion criteria used were people with mental disorders and their families who regularly interact with mental health cadres. Data were analyzed using inductive thematic analysis through six stages of coding and theme development. Results Several themes were identified. The most significant theme was emotional support provided by cadres in terms of reception from cadres about people with mental health problems (59.1%), tangible support in which cadres help people with mental disorders get treatment (52.27%), and cadre roles as duties/mandates (51.36%) was factors that facilitated the success. The finding of this study indicated that cadres were considered to provide a range of different support to people with mental health disorders and their families. In carrying out their role, there were factors that participants felt increased success in implementing the role of cadres. The cadre-patient/family relationship was influenced by perceived shame, trust relationship, and stigma. This research also revealed patient and family expectations about cadres' roles. Conclusions Exploring the experiences of people with mental disorders and their families who received support from cadres could examine the factor that increases success in implementing cadre roles and barriers to mental health services by cadres, which are shame, mistrust, and stigma in the community. Therefore, paying attention to the expectations of people with mental health problems and their families about the cadre's roles in improving mental health services in the community is essential.