Serious health-related suffering experienced by children with disability in Bangladesh

Background:

In 2020, the International Association for Hospice and Palliative Care redefined palliative care to incorporate the concept of serious health-related suffering.1 An estimated 21 million children globally live with conditions which would benefit from a palliative approach to relieve suffering. Bangladesh is a lower-middle income country with isolated provision of palliative care.2

 

Aim: To synthesize existing evidence describing serious health-related suffering of children with disability and their families living in Bangladesh and the intersection between this suffering, palliative care and rehabilitation.

 

Methods: The scoping review methodology, informed by the Johanna Briggs Institute approach, was chosen to map the nature of evidence in this field. A search for research and grey literature published between 1990-2021 was conducted. Papers pertaining to serious health-related suffering of typically developing children and those over eighteen years were excluded. Data which addressed the three domains of serious health-related suffering (physical, social, and emotional/spiritual) were extracted. Palliative care interventions were assessed with a pre-existing checklist

Results and Conclusion: Forty-six studies were included, representing ten different methodologies. Sample sizes ranged from 11 to 2582 participants, with 87% of studies including children with cerebral palsy. Serious health- related suffering was described in 100% of the studies, only 14 of the studies described specific interventions to mitigate suffering. Convergence between palliative care and rehabilitation approaches was evident. Findings document the extensive nature and burden of serious childhood health-related suffering that may be remediated by a palliative approach. They highlight the urgent need to prioritise service development and research in this area.