Perceptions of Quality of Life Among Informal Caregivers of Autistic Children and Adolescents in Chile: A Qualitative Study

Abstract

This study explores the lived experiences and quality of life of informal caregivers of autistic children and adolescents in Chile from a relational and socio-ecological perspective. Twelve caregivers were recruited through purposive and snowball sampling and participated in semi-structured interviews. Data were analysed using qualitative content analysis with a deductive–inductive approach, complemented by computational text analysis. Findings show caregiving as a dynamic adaptive process in which daily routines, work trajectories, emotional well-being and identity are reorganised in response to care demands. Support needs, co-occurring conditions and limited access to services intensified burden. In contrast, formal and informal support, autism-related knowledge and opportunities for personal regulation acted as protective factors. Caregivers described coping processes ranging from active problem-solving to introspective and meaning-oriented responses. Results indicate that caregiving burden is shaped not only by individual characteristics but also by the availability and coordination of support systems.