Palliative Care Needs of Children with Chronic Conditions and their Caregivers: findings from a community-based Palliative Care Program in Bangladesh
Authors: Khadija Akther Shopna, Dr. Megan Doherty, & Dr. Mostofa Kamal Chowdhury (Adil)
‘Compassionate Korail’ is a community-based palliative care project supporting the needs of children and elderly people affected by life-limiting illness living in Korail, which is a large urban informal settlement (slum) in Dhaka, Bangladesh.
The project was implemented by the Department of Palliative Medicine of Bangabandhu Shiekh Mujib Medical University (BSMMU) in partnership with The Worldwide Hospice Palliative Care Alliance (WHPCA) in 2015. Initially project was supporting only elderly patients and later on in 2017 pediatric care also started with the external support from World Child Cancer (WCC) under their Children Palliative Care Initiative of Bangladesh (CPCIB) Program.
This program provides home-based care by trained community health workers, called palliative care assistants, as well as provides essential medications, medical supplies, physiotherapy, caregiver training, and psychological support free of charge to those in the program. Families are also provided with a monthly food packet to support their basic needs. The project includes supervision of the PCAs by palliative care team physicians and nurses. There is a small health center in the Korail Slum, which serves as a hub for the project and a place where the children can come for play therapy, developmental and rehabilitation services (e.g. physiotherapy, speech therapy).
Recently, a study exploring the experiences of children and their families who have been supported by the program, was published. The study focused on identifying the needs of children with chronic conditions and their family caregivers and is one of the first studies to describe the community-based pediatric palliative care in a resource-limited setting. This program includes predominantly children with severe neurological impairment due to a variety of causes including congenital conditions, birth injuries, as well as genetic and metabolic diseases. Children were identified through community awareness events and a door-to-door household survey, since these children rarely access hospital-based care.
In this study, 25 family caregivers were interviewed, to better understand their child’s medical needs and health problems, as well as the experiences and challenges for caregivers themselves. Caregivers also completed the Pediatric Quality of Life (PedsQL) Family Impact Module (FIM) questionnaire as an additional assessment tool seeking to better understand concerns or difficulties related to the child’s illness.
The study found majority of the children receiving palliative care in this setting have:
- pain (56%)
- respiratory issues (cough or difficulty breathing) (64%)
- fever (64%) and
- difficulties with eating/appetite (52%)
The majority (92%) of caregivers reported that the child’s medical needs were better supported by being part of the Compassionate Korail project. Most caregivers (96%) reported that they need to provide a significant amount of care which limits their ability to maintain their own emotional and physical wellbeing or do paid work to financially support to their own family.
Around the world, there are very few examples of community-based palliative care programs for children, and this study findings suggests that there is a significant unmet need for children’s palliative care which may not be identified through hospital-based programs, particularly for children with chronic neurological conditions. This study also shows how a relatively simple and low-cost community-based approach, using trained community health workers can provide palliative care and be implemented in areas where resources are limited.
To read the full text of the study please follow the link below: