Chronic illnesses requiring home-based palliative care and their impact on families in an urban resettlement colony of Delhi, India.

Abstract

Background: Non-communicable diseases are a growing public health concern in India. However, limited knowledge of community-based need for palliative care has contributed to its poor access.

Objective: To assess the community-based palliative care needs, social security access, and the economic burden on families requiring home-based palliative care.

Design: A community-based cross-sectional study.

Methods: The entire population of an urban resettlement colony was surveyed by trained field research workers to identify people requiring home-based palliative care, whose needs were confirmed by a physician trained in palliative care needs identification. Data were collected on sociodemographics, health status, disease details, access to social security schemes, and economic impact. People in need of home-based palliative care were referred for home-based care and social security guidance. Data were analyzed using R and geographically mapped with ArcGIS and Google My Maps.

Results: Out of 43,267 individuals, 0.21% (2 per 1000) required home-based palliative care. The majority were elderly males (60%), with 51.11% illiterate and 55.56% previously unemployed. Neurological disorders, primarily stroke (67.8%), were the leading cause of disability. The average Barthel Index score was 33, indicating severe dependence in nearly 49% of participants. 62.22% of families reported a negative quality of life, and 34.44% incurred debt due to illness. 73.33% had ration cards, 50% received pensions, and only 15.56% had public health insurance. The mean out-of-pocket healthcare expenditure was 58.56% of their per capita income and 11.11% of their total family income.

Conclusion: The study highlights the significant need for home-based palliative care in urban areas and the financial hardship families face. There is a need for community-based package development for palliative care service delivery followed by an evaluation of its effectiveness.