Exploring The Complex Roles And Challenges Of Caregivers Supporting Children With Autism Spectrum Disorder: A Qualitative Study

Abstract

Background: Caregivers of children with autism spectrum disorder (ASD) face a unique and demanding set of responsibilities, often underrecognized in both clinical and social contexts. This study aims to explore the complex roles and challenges experienced by these caregivers within a low-resource setting. Methods: A qualitative phenomenological design was employed, involving in-depth semi-structured interviews with 20 primary caregivers of children diagnosed with ASD, recruited from autism care centers in Chennai, India. Data were analyzed thematically using Braun and Clarke’s six-step framework. Results: Thematic analysis revealed five major themes: multifaceted parenting roles, emotional and psychological strain, social stigma and isolation, systemic and resource constraints, and coping and resilience strategies. Caregivers assumed multiple roles—ranging from therapist to advocate—while grappling with emotional exhaustion, financial burden, and lack of formal support. Despite these challenges, many relied on informal support systems, religious faith, and structured routines to manage their caregiving responsibilities. Conclusion: The study highlights the need for integrated support services and culturally relevant policies that address both the practical and emotional needs of caregivers. Strengthening caregiver-focused interventions can enhance not only caregiver well-being but also outcomes for children with ASD.