‘Family stigma’ among family members of people with mental illness in Indonesia: A grounded theory approach

Abstract

Stigma is of central importance to people with mental illness and their families. It impacts how they experience their illness and access available health services. An important principle in mental healthcare is empowering patients to live independently and productively, which requires optimal caring from family members. Stigma can seriously hinder this principle. This qualitative study was based on Straussian grounded theory. Participants were 25 family members of people with mental illness. Data were collected through semi-structured interviews, field notes and memos, and managed using Paillé data analysis. We extracted four interrelated categories: pasung (confinement), demonic/devil possession, alternative treatments and social isolation. Because of misunderstandings about mental illness, participants turned to alternative treatments provided by shamans and religious leaders. Participants reported being expelled from or isolated by their community, suggesting stigma is a reality experienced by families of people with mental illness in Indonesia. Addressing family stigma is important to ensure on-going support for patients and families. It is also important to develop and evaluate anti-stigma interventions in the Indonesian context. The present findings are relevant for mental healthcare professionals, related practice areas where families may be exposed to stigmatization and for international audiences with similar cultural and religious contexts.