A Qualitative Study of Medical and Rehabilitation needs of Primary Caregivers of Children with Developmental Disabilities in India: Implications for Health Service Interventions

Children with developmental disabilities require medical care, rehabilitation therapies, and social welfare support. While district early intervention centers offer some services, the private sector remains unorganized. The study aimed to qualitatively assess caregivers' needs, identify gaps in referral linkages, and suggest health systems interventions to assure smooth transition from medical to rehabilitation services. In-depth interviews of 28 caregivers of children with cerebral palsy, intellectual disability and autism spectrum disorder were conducted. Interviews were analyzed from the perspective of health systems interventions, using content analysis. Study revealed three themes. The first theme related to inadequate information at diagnosis including insufficient information about complications among high-risk babies, and inadequate guidance when delayed milestones were observed. The second theme related to interaction with the doctor, highlighting perceived lack of knowledge among doctors about developmental disabilities, ineffective communication, and limited knowledge about rehabilitation services. The third theme was regarding challenges with rehabilitation such as caregivers' inadequate knowledge about therapies benefits and need for coordination between doctors and therapists. Findings indicate the need for strengthening knowledge about early childhood development, the benefits of early intervention, and strengthening referral pathways to assure coordination between available services and continuity of care.