Needs of Families of Children with Cerebral Palsy in Bangladesh

Abstract

Background: A child with disabilities (CWD) can have a significant impact on the entire family unit. Families with a CWD are more likely to experience poverty and inequitable access to important resources, particularly in low resource countries like Bangladesh due to stigmatization and discrimination. Over the last few decades, an increased number of studies on family needs had been conducted in high-income countries, but family needs are under-studied in low-income countries. Therefore, the aims of this study were to: (a) explore the needs of families of children with cerebral palsy (CP) in Bangladesh; (b) investigate how some of the family needs have been met, and (c) identify the sources of supports that might help families to meet their needs in the future. Methods: Face to face, semi-structured, in-depth interviews were conducted with 20 family members (12 mothers, 4 fathers, 1 sister, 2 grandmothers, and 1 aunt) who visited the Centre for the Rehabilitation of the Paralysed (CRP), Bangladesh between June and August 2016 to receive services for a child with CP. A constant comparison method of the grounded theory approach within the broader spectrum of qualitative inquiry was used to analyze the data. Results: Participants identified five categories related to needs: (a) financial needs, (b) access to disability-related services, (c) family and community cohesion, (d) informational needs, and (e) emotional needs. Participants overwhelmingly reported that financial need is their greatest family need. Participants highlighted that some of their needs have been met through non-governmental organizations, extended family and community members. Participants reported that they receive little to no support from the government. However, participants identified the government as the key source who can play vital role in meeting their unmet needs. Conclusions: Further studies on needs of families of children with conditions other than CP and those who do not have access to rehabilitation services at CRP may provide greater insights into the needs of families impacted by disability in Bangladesh. Additionally, an in-depth analysis of existing disability related policies is required to determine the extent to which consideration of and accommodation for family needs is embedded within existing policies.