Beyond distress: Reasons for endurance in caregiving among spouses of persons with severe mental illness: An Indian study

Abstract Background: Spouses of persons with severe mental illness (SMI) would undergo distress because of the long-term caring demands, which lead to numerous difficulties and challenges, causing distress. In spite of this, many spouses in India would continue to care person with SMI. This research aims to capture the reasons contributing to enduring caregiving despite distress experienced by spouses of persons with SMI. Materials and Methods: Seventy-five spouses living with and caring for a person with SMI were recruited using purposive sampling techniques for a cross-sectional mixed-methods study. Distress among spouses was assessed using Kessler’s distress scale. Descriptive statistics were used to analyze the levels of distress among spouses. Eighteen distressed spouses who participated in qualitative, in-depth interviews shared their caregiving experiences, which were then examined using thematic analysis. Results: The study’s outcome revealed that 66.7% spouses experienced distress at different levels (mild, moderate and severe). Qualitative analysis revealed four main reasons for enduring caregiving: a sense of bonded duty, acceptance of one’s destiny, collective support, unwavering love and loyalty. Conclusion: This study showed that spouses in India are not only driven by emotional attachment but are also significantly influenced by Indian values, culture, religious beliefs, and marital commitment, which highlights both duty and sacrifice.