The Role of Caregivers in the Developmental Outcomes of Children with Disabilities in India

Introduction: This literature review investigates the extent and nature of evidence regarding the influence caregivers have on the developmental outcomes of children with disabilities in India. While global research highlights the critical role of caregivers, limited knowledge exists in the Indian context, where social, financial, and cultural factors significantly impact care. The influence of caregiver gender is particularly understudied. Methods: This review includes studies which analyse demographic or behavioural characteristics of familial or volunteer caregivers and their impact on developmental outcomes in children with disabilities under 18 years. Studies on non-disabling conditions, paid caregivers, non-English languages, and grey literature were excluded. A literature search in July 2023 using MEDLINE and CINAHL combined relevant terms related to children, disabilities, caregivers, and India. Both qualitative and quantitative studies were analysed, and a thematic analysis of the qualitative studies was undertaken. Data was extracted with a modified JBI instrument and tabulated. The quality of evidence was assessed using JBI Critical Appraisal Tools. Results: The search returned 1364 articles for title and abstract screening, after which 226 articles were selected for full-text review, and 23 articles met the inclusion criteria for analysis. Overall, there was heterogenous evidence of varying strength. Caregiver characteristics, such as socio-economic status and education, had a positive effect on developmental outcomes including health-related quality of life, school performance, and emotional wellbeing. Conclusions: The review has therefore identified a significant gap in the literature on the intersection of childhood disability, caregiver influence, and development in India. Further longitudinal research is recommended to better understand this dynamic.