Providing Home-Based Support for Children with Chronic Conditions in an Urban Slum: Experiences from a Community-Based Palliative Care Program in Bangladesh

Abstract

We describe the palliative care needs of children with chronic conditions and their caregivers in an urban slum in Bangladesh. In this cross-sectional study, we interviewed 25 caregivers whose children receive support from a community-based program lead by community health workers, that provides medication, medical supplies, food, caregiver training, and psychological support free of charge. The chronic conditions of children in the program included cerebral palsy (80%), congenital heart disease (8%), neurodegenerative conditions (4%), cancer (4%), and intellectual disabilities (4%). Common symptoms included cough or breathing problems (64%), fever (56%), and pain (56%). Most caregivers (96%) reported they were unable to do any paid work due to their child’s needs and in all families, the child’s condition had a significant impact on their financial situation. Community-based palliative care programs can be developed to support children with chronic conditions who may not access care from acute care facilities.

Serious health-related suffering experienced by children with disability and their families living in Bangladesh: A scoping review

“…84,85 Our review identifies an innovative model of community-based palliative care for children living in an urban informal settlement (slum); which incorporates rehabilitation (physiotherapy and speech pathology), suggesting a potential implementation strategy to address serious health-related suffering within Universal Health Coverage. 27 This model, informed by community-based palliative care first described in Kerala, India, focuses on supporting patients in their own homes and emphasises the use of community health workers. 27,[86][87][88] This model could serve to reach children with disability in low-and middle income countries, particularly in rural areas, where there are often shortages of healthcare professionals.…”

“…Social suffering was commonly described in terms of both children with disability and their caregivers experiencing financial hardship, stigma and social exclusion, abusive behaviour, lack of awareness of disability services and lack of basic rights (including birth registration, access to government supports and education). 10,17,18,20,27,35,[39][40][41][42][44][45][46][47][48][49][50][51][52][53][54][55][56][57][58][60][61][62][63][64][65][66][67][68][69][70][71][72][73][74][75][76][77][78] Emotional and spiritual suffering typically manifested as poor mental wellbeing for both the child and the caregiver. Stress, anxiety, depression, sadness, guilt, shame, abuse and trauma were common.…”

“…Stress, anxiety, depression, sadness, guilt, shame, abuse and trauma were common. 20,27,[39][40][41][42][43][44][45][46][47][48][49][50][51][52][53][54][55][56][58][59][60][61][62][63][64][65][66][67]71,77,78 Research Question 3: How does palliative care service provision impact the serious health-related suffering of children with disabilities and their families living in Bangladesh?…”

“…The recent intervention conducted in the urban marginalised society of Dhaka rated 11/15 with 15/15 being access to comprehensive and sustainable palliative care service provision. 27 Bereavement care was not reported, but possibly delivered, given that care was delivered in a community setting by consistent palliative care assistants, so the rating may well be even higher. The work amongst the Rohingya refugees scored highly both in the access and education/capacity building domains.…”

“…11,[22][23][24][25][26] Community based palliative care programmes in Bangladesh model a novel approach, combining palliative and rehabilitative approaches to care, which focuses on relieving serious health-related suffering for individuals and their families. 27,28 The aim of this scoping review is to synthesise the existing evidence concerning the serious health-related suffering of children with disability and their families living in Bangladesh and the intersection between serious health-related suffering, palliative care and rehabilitation.…”