Sharma Parth, Jayaprakasan Akshithanand Kuzhikkat, Rao Shivani, Bachawandia Himanshu, Sharma Geeta, Verma Geeta, Rawat Jyoti, Kumari Ranjana, Kumar Yogesh, Yadav Sunny, Alam Munabid, Zaidi Shees, Singh Mongjam Meghachandra, Sharma Nandini
Department of Community Medicine, Maulana Azad Medical College, New Delhi, Delhi, India.
Department of Community Medicine, SGT Medical College, Hospital & Research Institute, Gurgaom, Haryana, India.
Palliat Care Soc Pract. 2025 Sep 7;19:26323524251368907. doi: 10.1177/26323524251368907. eCollection 2025.
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.
To assess the community-based palliative care needs, social security access, and the economic burden on families requiring home-based palliative care.
A community-based cross-sectional study.
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.
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.
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.
在印度，非传染性疾病日益成为公共卫生问题。然而，对基于社区的姑息治疗需求了解有限，导致其可及性较差。
评估基于社区的姑息治疗需求、社会保障获取情况以及需要居家姑息治疗的家庭的经济负担。
一项基于社区的横断面研究。
由经过培训的现场研究人员对一个城市安置区的全部人口进行调查，以确定需要居家姑息治疗的人员，其需求由一名经过姑息治疗需求识别培训的医生确认。收集了社会人口统计学、健康状况、疾病详情、社会保障计划获取情况以及经济影响等方面的数据。需要居家姑息治疗的人员被转介接受居家护理和社会保障指导。使用R软件对数据进行分析，并使用ArcGIS和谷歌地图进行地理映射。
在43267人中，但0.21%（每1000人中有2人）需要居家姑息治疗。大多数是老年男性（60%），51.11%为文盲，55.56%以前失业。神经系统疾病，主要是中风（67.8%），是致残的主要原因。平均巴氏指数评分为33，表明近49%的参与者严重依赖他人。62.22%的家庭报告生活质量较差，34.44%因疾病负债。73.33%的家庭有配给卡，50%领取养老金，只有15.56%有公共医疗保险。自付医疗费用平均占人均收入的58.56%，占家庭总收入的11.11%。
该研究突出了城市地区对居家姑息治疗的巨大需求以及家庭面临的经济困难。需要制定基于社区的姑息治疗服务包，随后评估其效果。
