Unveiling the hidden struggles: a qualitative study on caregiver burden among stroke survivors

Stroke survivors depend on informal caregivers who face considerable financial, emotional, social, and physical demands. Although they are very involved, the actual experiences of caregivers remain minimally studied. While caregiver burden is widely documented, limited research has explored the gendered nuances and culturally specific coping mechanisms among stroke caregivers in South India.

To investigate the lived experiences of informal caregivers tending to stroke survivors.

This study employed a descriptive phenomenological design to capture the lived experiences of caregivers. It is a Colaizzi phenomenological study that examined data from in-depth interviews conducted between November 2024 and January 2025 with sixteen main caregivers at SRM Medical College & Research Centre, utilizing Colaizzi's approach. Participants were chosen using the Purposive sampling method until data saturation was reached. The interviews' transcriptions were examined for developing themes. Themes identified include emotional burden, physical and health-related burden, economic burden, and social isolation.

Caregivers reported anxiety, depression, guilt, and helplessness, reflecting an emotional and psychological burden. Caregivers suffered from sleep deprivation, chronic pain, tiredness, neglected self-care, physical and health-related burdens. Significant stress resulted from economic burden, including growing healthcare costs, job loss, and insufficient financial support. Caregivers reported changed family dynamics, social isolation, and loneliness as part of their social and relationship impact. Many caregivers said that despite these challenges, they experienced personal development, strengthened emotional bonds with their loved ones, and developed greater resilience in coping with their caregiving responsibilities.

In particular, informal caregivers of stroke survivors deal with several challenges, particularly in emotional and physical spheres. Although obstacles at first seem overwhelming, many adjust and find significance in their caring responsibilities. Maintaining the psychological, physical, financial, and social needs of caregivers and patients depends on complete support plans covering all aspects of their needs.