A qualitative study on the psychological journey and mental health-related factors among caregivers of children with autism

Caregivers of children with autism spectrum disorder (ASD) often experience sustained psychological burden due to long-term caregiving demands. However, less is known about how their emotional experiences and psychological adaptation evolve over time, as well as how multiple contextual factors shape their mental health in narrative form. This qualitative study used life-story interviews with 22 primary caregivers of children with ASD recruited from rehabilitation centers and special education schools in southeastern China. Approximately 360,000 Chinese characters were analyzed using life-story tone analysis, thematic analysis, and grounded theory. Emotional word frequency analysis was used to assess narrative tone, while thematic and grounded theory approaches were applied to construct psychological journeys and identify influencing factors. Findings showed that caregivers’ narratives contained more negative than positive emotional expressions overall. The psychological experience of caregiving followed a seven recurring phases: denial, despair, confusion, self-blame, acceptance, active coping, and hope. In addition, a Four-Ring Model was developed to explain mental health influences, including family support system, social support system, life experiences, and self-personality. These four domains interacted dynamically across different stages of caregiving. The study suggests that caregivers’ mental health is shaped by both temporal psychological processes and multi-level contextual factors. The identified journey and Four-Ring Model provide a framework for understanding adaptation among ASD caregivers and may inform stage-sensitive psychological and social interventions.