Experiences of primary caregivers of persons suffering from severe mental illness: a qualitative narrative inquiry

Abstract

Background: Primary caregivers of persons with severe mental illness (SMI) in India work at the intersection of thin public mental health infrastructure, social stigma, and legislation that is progressive on paper but poorly enforced.

Objectives: To document the psychosocial, economic, and legal experience of ten primary caregivers of persons with Schizophrenia or Bipolar Affective Disorder (BPAD), and to examine how far statutory protections under the Mental Healthcare Act (MHCA) 2017 and the RPWD Act 2016 reach their daily reality.

Methods: A qualitative narrative inquiry was conducted with ten purposively selected primary caregivers attending psychiatric out-patient services at a New Delhi tertiary hospital. In-depth interviews were audio-recorded, transcribed, and analysed thematically.

Findings: Seven themes emerged. Four extend known patterns - economic attrition, gendered role reorganisation, stigma management, and informal (spiritual/peer) coping. Three emergent observations warranting further study were identified: grief for a lost pre-illness identity, stigma intensification post-formal care contact, and gendered barriers to legal authority.

Conclusions: Caregivers remain an unrecognised, uncompensated workforce whom current legislation does not yet reach in practice. Given the small sample, the three emergent observations should be read as hypotheses for confirmatory research rather than established findings.