Developing Community-Based Palliative Care for Children: A Community Case Study from an Urban Informal Settlement in Bangladesh

Abstract

Background: 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. Context: 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. Problem: 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. Solution: 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. Conclusion and lessons learned: 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.