Disadvantage, discrimination, and despair: Parental experiences of caring for children with disability in Bangladesh

Abstract

This paper explored parental experiences of caring for children with disability (CWD) living in the Sylhet city corporation area of Bangladesh. This study applied a qualitative research approach. The purposive snowball sampling method was employed to recruit study participants. Twenty-one in-depth interviews and two focus group discussions with parents of children with physical, hearing, vision, and intellectual disabilities were conducted to learn more about their experiences and identify the difficulties and challenges they confront in their everyday lives. The results showed that respondents experience various disadvantages, for example, treatment-related challenges, financial incapacity, housing, and transportation issues. The study also indicates that parents are subjected to discrimination, experience stress, and tension, and become depressed when they consider the future distressing condition of CWD after their death. Poverty, the societal stigma associated with disability, and a lack of social supports exacerbate parents' mental anguish and limit their ability to care for CWD patients. Therefore, it is recommended to develop new services delivery strategy, including home care, respite care, and monetary transfers for CWD caregivers, as well as community mobilization and inter-professional collaboration, to enhance their current situation and overall well-being.