Caregiver perceptions of participation determinants in a Northern Indian community-based early intervention program: a qualitative study

PURPOSE: Parent-therapist collaboration is essential in early intervention programs for children with disabilities to enhance outcomes. Participation in rural communities is low, despite the benefits it offers. This study explored their experiences in an early intervention program in a rural community setting. MATERIALS AND METHODS: This is a phenomenological study. Ten participants were included in the study using Focus Group Discussion (FGD) and face-to-face in-depth interviews. It was conducted in early intervention programs at a rural hospital in India, with a focus on community-based centers for families of children with disabilities. RESULTS: Early intervention programs are influenced by 1) socio-cultural factors: cultural stigma, delay in recognition, and the importance of walking as a therapy goal, 2) Family factors: financial impacts, family and community influence, and hope leading to adherence to home programs, 3) Service factors: guidance from healthcare professionals, perceived benefits of the program, and caregivers' needs. CONCLUSION: This study reveals that families of children with disabilities in rural areas encounter socio-cultural stigmas, environmental barriers, and limited support. A group-based community rehabilitation model helps foster social support, peer learning, and emotional resilience for caregivers. The findings emphasize the necessity for culturally responsive and family-centered early intervention systems in low-resource settings.