Need of community-based palliative care in rural India and factors that influence its sustainability: a comprehensive exploration using qualitative methodology in rural Puducherry, India

Abstract

Background: The existing palliative care services in India are concentrated in urban areas, attached to tertiary care hospitals. This poses issues relating to access and equity for people in rural locations and with low socioeconomic status. A Community-Based Palliative Care (CBPC) service named Sanjeevan has been initiated in Puducherry, a union territory of India to provide physical, social, psychological, and emotional support to incurably ill people, including older adults living in rural areas. Objectives: To understand the social mechanisms that underpin the implementation of CBPC in rural parts of India and the challenges to its sustainability. Design: Qualitative research using focus group discussions (FGDs) and key informant interviews (KIIs). Methods: Community-based participatory research (CBPR) approach was used in this study, and descriptive analysis was done. Through CBPR it was possible to document and interpret local knowledge on the community concerns and assets along with the experiences of the community members. Purposive sampling was used to identify vocal participants involved in patient care and areas of the Sanjeevan program such as financial management, administration, and community mobilization. Seven KIIs and four FGDs were conducted, with 7–8 participants in each. Results: The analysis indicated the need for a CBPC and the factors enabling its establishment. The findings revealed capacity building, resources for palliative care services, and the existing social structure of the community being the main challenges that need to be overcome for better penetration of CBPC services into society. Demand generation through sensitization and administration of services based on the need and regular follow-up remains the key strategies for the sustainability of the program. Conclusion: The CBPC program like ‘Sanjeevan’ adopted in the rural area of Puducherry can be cited as an example and can be replicated in other rural settings with similar sociocultural characteristics to support people living with end-stage diseases.

Awareness building and improving participation of local communities in palliative care

“…For example, in India, there are Accredited Social Health Activists (ASHA) workers who are trained according to modules from the National Health Mission. Governing bodies such as Panchayati Raj Institutions provide bureaucratic roles and oversight to ensure accountability [14]. Village leaders, volunteers and non-governmental organizations work together on problem-finding and solving activities to foster shared responsibilities for community health and social wellness.…”