Needs and Experiences of Primary Caregivers Rearing a Child with Autism Spectrum Disorder: A Qualitative Study

Abstract

Introduction
Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder that affects both children and their families. Raising a child with ASD presents unique challenges and experiences that this study has aimed to explore to in the Nepalese context.

Methods
A phenomenological qualitative study was conducted with the inclusion of 10 primary caregivers via purposive sampling of children with ASD of age five to ten years and diagnosis of at least six months from January 2024 to November 2024 in Kathmandu, Nepal. Data were collected through face-to-face in-depth interviews with approval from the Institutional Review Committee of NAIHS. Data analysis was done based on  Braun and Clarke’s (2006) thematic analysis method.

Results
Following six themes as daily parental challenges; Financial constraint; Mixed impact on the health of caregivers; Impact on relationships; Support from government level and quality medical care were extracted based on total 13 subthemes and 54 codes mentioned below with verbatim of participations.

Conclusion
Caregivers on a personal-level reported challenges arising from a lack of knowledge in managing nutritional needs and behavioral issues, along with financial constraints. At the institutional level, special attention was drawn to the lack of autism-specialized healthcare and high financial expenditures when seeking treatment in Nepal. These findings highlight the need for accessible and specialized healthcare services in Nepal with increase in governmental allowance for children with ASD.