Voices From the Margins: Parent Perspectives on Raising Children With Developmental Disabilities and Disorders in Tribal Gujarat

Introduction Children with developmental delays, defects at birth, disabilities, and disorders (4D conditions) represent a significant global population, with 93 million children worldwide living with moderate to severe disabilities. In India's tribal communities, these challenges are amplified by geographical isolation, cultural factors, and limited healthcare infrastructure. This study examined parental roles in fostering functionality among children with 4D conditions in Valsad district, Gujarat, where 28.88% of the population belongs to Scheduled Tribes. Methods A parallel mixed-methods study was conducted at the District Early Intervention Centre in Valsad district. The quantitative component involved structured interviews with 153 parents using a validated questionnaire, while the qualitative component comprised 20 in-depth interviews exploring parental experiences and challenges. Data were analysed using SPSS 26.0 and MAXQDA Analytics Pro 2020. Results Participants were predominantly aged 30–40 years (63%), with 45% belonging to Scheduled Tribes. Critical gaps emerged in early detection, with only 37% of parents aware of their child's diagnosis despite 84% being primary identifiers of developmental concerns. Parents demonstrated extraordinary commitment—84% maintaining regular follow-ups and 89% dedicating extra developmental time—while facing significant challenges. Four major themes emerged: (1) Emotional challenges including stress, anxiety, insufficient family support, and parental guilt; (2) Healthcare accessibility barriers including limited services and communication gaps with providers; (3) Social challenges encompassing community stigmatization, educational exclusion, and widespread misconceptions about developmental disabilities; and (4) Economic hardship from substantial out-of-pocket expenses creating unsustainable financial burden. Conclusion Parents in tribal regions demonstrate remarkable commitment while navigating multiple systemic barriers including healthcare communication failures, social stigma, and educational exclusion. The convergence of rural residence, tribal identity, and disability creates triple marginalization that amplifies existing inequities. Addressing these challenges requires coordinated action across healthcare, education, and social services, guided by cultural responsiveness and family-centered care principles. Future interventions should develop culturally adapted models that build on parental strengths while addressing support gaps through innovative service delivery, professional training, and policy reform.