Palliative care and social practice · 2025
Chronic illnesses requiring home-based palliative care and their impact on families in an urban resettlement colony of Delhi, India.
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Sharma Parth, Jayaprakasan Akshithanand Kuzhikkat, Rao Shivani, Bachawandia Himanshu, Surender, Sharma Geeta, Verma Geeta, Rawat Jyoti, Kumari Ranjana, Apurva, Kumar Yogesh, Yadav Sunny, Alam Munabid, Pushpender, Zaidi Shees, Singh Mongjam Meghachandra, Sharma Nandini
Аннотация
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.
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.