Culturally adapting family interventions for people with schizophrenia in Indonesia: An intervention development study using programme theory

Abstract

Schizophrenia is a leading cause of disability and global burden worldwide. Low- and middle-income settings are disproportionately affected, and evidence-based, psychosocial interventions are largely unavailable, undeveloped and under-researched for this population. Family interventions have a particularly strong evidence base for reducing relapse risk with medium to large effect sizes. World Health Organisation international clinical guidelines, recommend family interventions as an essential intervention in these settings. Despite this, evidence is emerging that family interventions can deliver positive outcomes in these settings and there are few studies examining the suitability and effectiveness of delivering these in settings with varied socio-economic climates and cultural differences.

We used the Medical Research Council Framework for Developing Complex Interventions, conducting a series of separate but interrelated studies to adapt a testable, evidence-based, culturally relevant family intervention for people with schizophrenia and their families in Indonesia. Our theory driven approach utilises an existing heuristic model to explore stakeholder (service-users, caregivers and healthcare professionals; n = 51) preferences and priorities about family interventions and qualitative interviews with key informants (n = 14) exploring implementation related facilitators and barriers that affect the utility and ecological validity of these interventions. We used a modified nominal group technique to allow divergent ideas to be expressed and collated identifying areas of consensus regarding the optimal content, format and delivery of family interventions.

Our theory of change outlines that while family interventions primarily target relapse, they may also influence broader outcomes like quality of life, functioning, and social inclusion, though not solely responsible for changes in these areas. Therapist confidence depends on training, supervision, and understanding family needs. Intervention components, based on mechanisms of change and stakeholder preferences, align with empirical and theoretical evidence including psychoeducation, communication skills, and relapse prevention. Addressing maladaptive beliefs about schizophrenia, such as hopelessness and blame, was theorised to foster recovery and reduce stigma, a key stakeholder concern.

This theory of change will aid the design of our evaluation, and guide local implementation strategies, inform the development of data collection protocols, and provide a framework for interpreting results. This provides an opportunity to engage stakeholders actively incorporating their perspectives and knowledge into the planning process of the intervention and its implementation, ensuring engagement with policy makers to secure knowledge mobilisation, buy-in and partnership working.