A qualitative study on the experiences of grandparents in the caregiving process of their grandchildren with autism spectrum disorder

Abstract

Autism Spectrum Disorder (ASD) is a neurodevelopmental condition associated with lifelong support needs and significant challenges in social communication, interaction, and behavior, thereby affecting not only individuals but also family systems. Caring for children with ASD requires multidimensional adaptation and reorganization that often extends beyond parents to include the extended family, with grandparents frequently assuming critical roles. Despite their importance, grandparents’ experiences in the caregiving process remain underexplored, as most studies focus primarily on parent-centered caregiver burden and family stress. Existing evidence indicates that grandparents face multifaceted challenges, including age-related physical limitations, limited knowledge about ASD, difficulties in managing crises, and exposure to social stigma. At the same time, strong emotional bonds with their grandchildren and contributions to family cohesion can transform caregiving from a source of burden into a meaningful life experience, highlighting the need to examine these experiences in depth to inform family-based interventions and support policies that address the extended family. Accordingly, this study aimed to explore the experiences of grandparents caring for grandchildren with ASD using a qualitative phenomenological design. The participants were 14 grandparents selected through purposive sampling based on voluntary participation and on having provided care to a grandchild with ASD for at least 3 years. Data were collected through semi-structured interviews and analyzed using content analysis. The findings showed that while some grandparents perceived caregiving as meaningful and valuable, others experienced it as physically and emotionally demanding or viewed it as a natural family responsibility. Grandparents assumed active roles in daily care, social and educational support, and assistance to parents, encountering various challenges and expressing needs for informational, psychological, and social support. Caregiving exerted both positive and negative effects on family relationships. Based on these findings, strengthening parent–grandparent collaboration, developing targeted intervention programs for grandparents, and conducting future longitudinal and mixed-method research are recommended.