Stakeholder perspectives of family interventions for schizophrenia in Indonesia: a qualitative study

Mental illnesses comprise the single largest source of health-related economic burden globally and low-and middle-income countries (LMICs) are disproportionately affected. Many individuals with schizophrenia do not receive evidence-based, psychosocial interventions as these are largely unavailable, undeveloped, and under-researched in LMICs. Involving service-users and carers in the design of interventions is crucial to ensure stakeholder needs are adequately addressed by the intervention and to aid successful implementation. We aimed to explore the views and perspectives of different stakeholder groups about the delivery, format, and content of family interventions for people living with schizophrenia in Indonesia as a first step towards developing evidence-based, acceptable family interventions. This study used a qualitative design comprising single stakeholder focus groups. Data were analysed separately using the framework approach incorporating deductive and inductive coding within an existing heuristic framework. 51 participants consented to take part in this study comprising six stakeholder consultation groups including service-users (n = 15), caregivers (n = 15) and healthcare professionals (n = 21). Service users were diagnosed with schizophrenia. Caregivers comprised parents (n = 10, 67%), brothers (n = 2, 13%), sister (n = 1, 7%) and husbands (n = 2, 13%). Healthcare professionals were working as nurses (n = 6, 29%), doctors (n = 5, 23%) or cadre's (n = 10, 48%). Caregiver and service-user respondents had limited knowledge or experience of structured family interventions. There was strong support for such interventions, however, for effective delivery a number of challenges exist in terms of widespread stigmatised views, low expectations for involvement in sharing decisions about care and treatment, views that healthcare professionals are expert and have the authority to delegate tasks to families such as responsibility for ensuring medication adherence and understanding the need to balance the needs of both service-users and families when there are conflicting agendas for treatment. These findings can support the development of evidence-based family interventions for families of those with schizophrenia in Indonesia, as user-informed interventions enhance engagement, satisfaction, and adherence to family interventions.