Caregiver Burnout: What are the Experiences of Burnout and Quality of Life of Caregivers Taking Care of Adults with Autism Spectrum Disorder?

Abstract

This qualitative study explored the lived experiences of 13 caregivers providing long-term care for adult children with autism spectrum disorder (ASD) through an interpretative phenomenological analysis lens. The study aimed to understand caregivers’ interpretations of their roles and the enduring emotional, physical, and financial burdens. Two overarching themes—quality of life (QoL) and caregiver challenges—emerged, connected by the central theme of burnout. Eleven subthemes, including mental exhaustion, social isolation, lack of self-care, and future caregiving concerns, illustrated the depth of caregiver strain. Participants consistently reported emotional fatigue, insufficient support, and compromised personal well-being due to the demands of caregiving. The study underscores the pressing need for adult-focused services, including respite care, mental health support, and financial resources. Findings emphasize the importance of developing targeted interventions to alleviate caregiver burden and enhance QoL, contributing valuable insights to the literature on lifelong caregiving in the ASD community.

Keywords

Quality of life caregiver burnout autism spectrum disorder

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