Experiences of the family caregivers of persons with schizophrenia in north Indian region: A qualitative inquiry

Family caregivers with schizophrenia struggle with psychological, social, and other challenges due to stigma, lack of adequate information, and maladaptive coping strategies. We aimed to explore the experiences of caregivers of persons with schizophrenia (PwS) to comprehend the emotional challenges and other burdens and coping strategies utilized. We subscribed to a phenomenological approach and interviewed nine caregivers in-depth. Audio-recorded interviews were transcribed and translated from Hindi to English. Thematic analysis was performed using the seven-step Colaizzi's method. ATLAS.ti.22 was used for the analysis of the data. Five themes emerged from the data: 1) general understanding of schizophrenia, 2) emotional burden, 3) Disruption in personal and socio-occupational life, 4) challenges in caregiving, and 5) coping strategies. Caregiving adversely affected the quality of life socially and financially. Schizophrenia stigmatized families, trapped them in their homes, and left them no choice but to get support from informal networks. Also, caregivers experienced a lack of healthcare facilities in the vicinity and reported a substandard level of formal care. Giving care to PwS entails financial, social, emotional, and physical burden. Feelings of frustration, helplessness, uncertainty, and loss are common. Transformation of personal, professional, and social life are usual consequence of caregiving. Generally, caregivers cope through addictions or spiritual means. Significant perceived requirements include a lack of knowledge about the condition and how to manage it as well as inadequate support services. Emotional and financial support and community support services near home may ease the burden of caregiving for PwS.