Understanding caregiver burden and quality of life in Kerala’s primary palliative care program: a mixed methods study from caregivers and providers’ perspectives
The study explores the caregiver burden and quality of life (QoL) among caregivers of palliative care patients in Kerala, India, with a particular focus on aging caregivers. Kerala’s decentralized health governance system, which has been operating for almost three decades, has pioneered a community-driven approach to palliative care. This program heavily depends on family caregivers , who face numerous challenges, including physical, psychological, social, and financial burdens. Despite these challenges, caregiver issues remain under-addressed in the program’s design and implementation. A mixed-methods approach was adopted, combining a cross-sectional survey of 221 caregivers and in-depth interviews with caregivers and palliative care nurses. The survey utilized tools such as the Achutha Menon Centre Caregiver Burden Inventory and EuroQol EQ-5D-5L to measure caregiver burden and QoL. Qualitative data were obtained through interviews with caregivers and nurses, exploring their perc...