Experiences of family carers in providing care to children with intellectual disabilities in India: A qualitative evidence synthesis

Abstract

Background: India has a significant prevalence of people with intellectual disabilities. Despite their higher prevalence, they receive poor support. Therefore, this review aims to explore the experiences of family carers in providing care for children with intellectual disabilities in India. Methods: A qualitative evidence synthesis was undertaken, searching databases such as MEDLINE, CINAHL, Web of Science, and PsycInfo up to October 2023. Grey literature was also searched for unpublished studies, with two reviewers assessing methodological quality. Eleven eligible studies, mostly qualitative in design, were included in the review. The data synthesis followed a thematic approach. Results: The synthesis found five themes representing family carers' experiences and perspectives. These were ‘resilience and acceptance’, ‘parental response’, ‘care dynamic’, ‘preparing for transition to adulthood’ and ‘parental advocacy’. Conclusion: Family carers hold diverse views, while almost all consider providing care complex and challenging, with few positive experiences.