Burden of Care: A Study of Caregiver Experiences in Managing End-of-Life Care for Cancer Patients with Sensory Disabilities in India

This study explored the challenges experienced by six end-of-life caregivers of four cancer patients with sensory disabilities - two with visual impairments and two with speech and hearing impairments - in India. Purposive sampling and in-depth interviews were used to illustrate the everyday challenges caregivers encountered, the communication barriers, and the burden of making decisions. The study also attempted to explore how the caregivers, comprising wives, children, and siblings of the respective patients, maneuvered in a medical system that failed to offer a disability-sensitive healthcare milieu. The findings revealed significant emotional stress, ethical dilemmas concerning making decisions, and a serious communication gap both within residential and medical institutions. This research emphasized the urgency in addressing the distinctive needs of this population at the institutional and policy level as it was the family members, more often than not, who ensured equitable and compassionate end-of-life care for patients with disabilities.