Muckaden Mary Ann, Ghoshal Arunangshu, Talawadekar Pradnya, Marston Joan Mary, Paleri Anil Kumar
Department of Palliative Medicine, Tata Memorial Hospital, Mumbai, Maharashtra, India.
National District Hospital Bloemfontein, ICPCN Global Ambassador for Children's Palliative Care, Palliative Care in Humanitarian Aid Situations and Emergencies PallCHASE, Bloemfontein, South Africa.
Indian J Palliat Care. 2022 Jul-Sep;28(3):236-249. doi: 10.25259/IJPC_20_2021. Epub 2022 Jun 29.
To describe the key initiatives that were successful in planning and implementing hospital- and community-based Paediatric Palliative Care (PPC) services designed for a resource-limited setting in Maharashtra, India, in collaboration with DfID.
The CPC project was a 5-year service development project (April 2010-March 2015) conducted in Maharashtra, India, developed in collaboration with the Department for International Development (DFID), Hospice UK, International Children's Palliative Care Network (ICPCN), Indian Association of Palliative Care (IAPC) and Tata Memorial Centre, to advocate and care for the needs of children and families with life-limiting illnesses in a non-cancer setting. It was implemented through raising awareness and sensitising hospital administrators and staff about PPC, providing education and training on PPC, team building, and data collection to understand the need for PPC.
The total number of children enrolled in the CPC project was 866, 525 (60.6%) were male with a mean age of 9.3 years. Major symptom across sites was mild pain, and serial Quality of Life measurement (through PedsQL questionnaire) showed improvement in social, psychological and school performance. Advocacy with the Ministry of Health helped in procurement of NDPS licenses in district hospitals, and led to access to palliative care for children at policy level.
The model of PPC service development can be replicated in other resource-limited settings to include children with life-limiting conditions. The development of pilot programmes can generate interest among local physicians to become trained in PPC and can be used to advocate for the palliative care needs of children.
描述与国际发展部合作，在印度马哈拉施特拉邦资源有限的环境中成功规划和实施基于医院和社区的儿科姑息治疗（PPC）服务的关键举措。
CPC项目是一个为期5年的服务开发项目（2010年4月至2015年3月），在印度马哈拉施特拉邦开展，与国际发展部、英国临终关怀协会、国际儿童姑息治疗网络（ICPCN）、印度姑息治疗协会（IAPC）和塔塔纪念中心合作开展，旨在倡导并满足非癌症环境中患有危及生命疾病的儿童及其家庭的需求。该项目通过提高医院管理人员和工作人员对PPC的认识和敏感度、提供PPC教育和培训、团队建设以及数据收集来了解PPC需求等方式得以实施。
CPC项目登记的儿童总数为866名，其中525名（60.6%）为男性，平均年龄为9.3岁。各地点的主要症状为轻度疼痛，连续的生活质量测量（通过儿童生活质量量表问卷）显示社会、心理和学校表现有所改善。与卫生部的宣传工作有助于在地区医院获得《麻醉药品和精神药品法》许可证，并在政策层面为儿童提供姑息治疗。
PPC服务开发模式可在其他资源有限的环境中复制，以纳入患有危及生命疾病的儿童。试点项目的开展可激发当地医生接受PPC培训的兴趣，并可用于倡导儿童的姑息治疗需求。
