Chowdhury Mostofa Kamal, Bezzahou Maryam, Khanom Marufa, Doherty Megan
Department of Palliative Medicine, Bangabandhu Sheikh Mujib Medical University, Dhaka, Bangladesh.
Faculty of Medicine, University of Ottawa, Ottawa, ON, Canada.
Health Serv Insights. 2023 Mar 22;16:11786329231162996. doi: 10.1177/11786329231162996. eCollection 2023.
Globally, more than 97% of children needing palliative care reside in low- and middle-income countries, where there is very limited access to palliative care. Several community-based palliative care programs focused on adults, have been described in resource limited settings, suggesting a simple and low-cost approach to providing palliative care. The implementation of community-based palliative care for children has not previously been described.
This community case study describes the implementation of an innovative model of community-based palliative care program in and urban informal settlement, (Korail Slum, Bangladesh). The program is led by a local government hospital, with experience in community-based palliative care, in partnership with the local community.
Children with serious conditions in an urban unformal settlement do not have access to health services which address their medical, psychosocial and spiritual needs. This gap leads to a significant burden of preventable suffering for them and their families.
A community-based palliative care program was implemented, which includes home care by trained community health workers, with support and supervision from palliative care nurses and physicians. The program's objective is to provide effective symptom management, clear communication about the child's condition with parents, and psychosocial support including support for basic needs. The program was free for families including medications, medical equipment, physiotherapy, and speech therapy. The program was monitored through regular assessments of quality of life using standardized tools (PedsQL Family Impact Module), as well as interviews and focus group discussions.
A model of community-based palliative care for children can be implemented in an urban informal settlement. Program effectiveness is enhanced by community health workers who share language, culture, and life-experiences with the individuals they serve. Partnerships with local health care facilities and community groups strengthen the program's sustainability. Ensuring financial sustainability remains a challenge.
在全球范围内，超过97% 需要姑息治疗的儿童生活在低收入和中等收入国家，这些国家获得姑息治疗的机会非常有限。在资源有限的环境中，已经描述了几个以成人为主的社区姑息治疗项目，这表明提供姑息治疗有简单且低成本的方法。此前尚未描述过针对儿童的社区姑息治疗的实施情况。
本社区案例研究描述了在城市非正式住区（孟加拉国科雷尔贫民窟）实施的一种创新的社区姑息治疗项目模式。该项目由一家在社区姑息治疗方面有经验的当地政府医院与当地社区合作牵头。
城市非正式住区中患有严重疾病的儿童无法获得满足其医疗、心理社会和精神需求的卫生服务。这种差距给他们及其家庭带来了可预防痛苦的巨大负担。
实施了一个社区姑息治疗项目，其中包括由经过培训的社区卫生工作者提供家庭护理，并得到姑息治疗护士和医生的支持与监督。该项目的目标是提供有效的症状管理，与家长就孩子的病情进行清晰沟通，以及提供心理社会支持，包括对基本需求的支持。该项目对家庭免费，包括药物、医疗设备、物理治疗和言语治疗。通过使用标准化工具（儿童生活质量量表家庭影响模块）定期评估生活质量以及进行访谈和焦点小组讨论来监测该项目。
可以在城市非正式住区实施针对儿童的社区姑息治疗模式。与所服务的个人有共同语言、文化和生活经历的社区卫生工作者可提高项目成效。与当地医疗保健机构和社区团体的伙伴关系增强了项目的可持续性。确保财政可持续性仍然是一项挑战。
