Caregiving and Help Seeking in First Episode Psychosis: A Qualitative Study

Abstract

The early stages of psychosis pose a frightening and challenging period for their caregivers. In India, the majority of patients with psychosis live with their families, who play an important role in patients’ care and treatment. However, their experience in caring persons with psychosis or help-seeking behaviors in the early stages of psychosis is largely unknown. Using a qualitative method, the present study explored the experiences in caring and help-seeking in carers of patients with first episode psychosis. In-depth audiotaped interviews were conducted with 11 carers of patients with first episode nonaffective psychosis. Purposive sampling was used for data collection and content analysis was applied to the data. The major themes explored were sequence of help seeking and faith-healing practices, explanatory model of illness, illness management strategies, financial burden, perceived stress and stigma. Carers experienced shock, disbelief and anxiety about the unexpected behavioural changes in patients during the initial phase. The common pathway to ‘help seeking’ was faith-healing. It resulted in substantial delays in accessing psychiatric care and drain on family finances. Carers perceived themselves as vulnerable and helpless when patients became violent or demanding, refused to take medicines, experienced sleep disturbance, and remained idle and suspicious. Further, carers were hesitant to seek help due to their stigma attached to mental illness. Carers’ poor understanding and high stigma caused substantial delays in seeking psychiatric treatment. Caregivers experienced high levels of distress and difficulties. Understanding carers’ experience and help-seeking behavior may be important for planning and delivery of early intervention services for patients and carers.