RESUMO
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.
RESUMO
CONTEXT: There is a significant need for palliative care for patients living in low- and middle-income countries. The presence and intensity of physical symptoms is a major factor influencing the suffering of patients at the end of life. OBJECTIVES: The primary aim of this study was to determine the prevalence and characteristics of common physical symptoms experienced by patients with advanced, incurable illness in a developing country. METHOD: This study used semi-structured interviews in patients with advanced cancer or HIV/AIDS in Bangladesh. RESULTS: Pain was the most common symptom (70.6%) and was frequently reported to be severe (62.6%). Very few patients received strong opioids to treat their pain (13.7%). Other frequent symptoms included loss of appetite (23.5%) and fever (19.9%). The average number of physical symptoms reported was 3 (range: 0-23). The majority of patients rated their most recent symptom (excluding pain) as severe (64.3%), with 35.8% continuing to have severe symptom intensity despite treatment. CONCLUSIONS: This study reveals the significant burden of symptoms, and the associated suffering for patients living with incurable illness, in a developing country. Very few patients received strong opioids, despite frequently having severe pain. Frequently, the treatments that patients received did not alleviate their symptoms. Palliative care is vital for the relief of suffering for patients with advanced and incurable diseases, especially in low- and middle-income countries where access to curative treatments may be limited and patients often present to medical personnel when their illness is in an advanced stage or incurable.
