INTRODUCTION

Caregivers in low- and middle-income countries (LMICs) experience severe caregiver burden manifested as physical, emotional, developmental, social, and financial strain. The burden experienced by caregivers becomes severe in the case of patients in need of secondary palliative care since the care recipients are completely dependent on caregivers for activities of daily living (ADLs) and instrumental activities of daily living (iADLs) and require advanced nursing care and symptom management. The paper examines the interventions implemented by the best-performing secondary home-based palliative care (HBPC) unit in Kerala, focusing on the provision of caregiving services and resources, and evaluates their impact on perceived caregiver burden.

METHODS

Using in-depth interviews, qualitative data on aspects of caregiver burden and the impact of intervention by the HBPC unit were collected from 10 caregivers selected purposively to reflect the heterogeneity of the caregiver population. A multidimensional tool, the Caregiver Burden Scale (CBS), was developed to measure the impact of the HBPC unit on caregiver burden. A sample of 36 caregivers was selected using proportional random sampling from among the caregivers of 93 patients registered at the HBPC unit in 2021. Quantitative data on palliative care services provided by the secondary palliative care unit, activities of the HBPC unit, frequency and duration of home care visits, particulars of caregivers, and details of caregiving services and resources were collected and analyzed. Additionally, the device CBS was also administered to the selected sample of caregivers.

RESULTS

The domains of caregiver burden impacted by the HBPC unit are found to be time burden, emotional burden, physical burden, social burden, developmental burden, coping up burden, and quality care burden. Of all these domains, notable impact is seen in the developmental and quality care domains. This impact resulted from the HBPC unit targeting the health of caregivers, supporting caregiving services, and providing caregiving resources. The HBPC unit cared for caregivers' physical and emotional well-being and enabled them to maintain social relationships. In addition, medication management, advanced nursing care, and support for ADLs were provided during home care visits. The team, by coordinating with the local self-government (LSG) and other institutions, provided caregiving resources, including care facilities and caregiving education.

CONCLUSION

The experience of the intervention of the best-performing secondary home-based palliative care team in Kerala depicts that a holistic intervention in the form of provision of caregiving services and caregiving resources from the palliative team can have a positive impact on the various domains of caregiver burden.