Caregiver Burnout
What are the Experiences of Burnout and Quality of Life of Caregivers Taking Care of Adults with Autism Spectrum Disorder
Bibliographic Data
| ID | 21638772 |
|---|---|
| Authors | Dione Simmons-Floyd (0000-0001-8730-5541, Texas Wesleyan University, corresponding author), Violeta D Kadieva (Texas Wesleyan University) |
| Year | 2026 |
| Volume | 34 |
| Issue | 2 |
| Pages | 354-363 |
| Publication date | 2026-04-01 |
| Peer Reviewed | Yes |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | The Family Journal (JOURNAL) |
| Journal identifiers | ISSN: 1066-4807 • E-ISSN: 1552-3950 |
| Publisher | SAGE Publications (PUBLISHER • US) |
| DOI | 10.1177/10664807251403519 |
| OpenAlex | W7117579647 |
| Language | EN |
| References cited | 27 |
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
Autism · Autism spectrum disorder · Burnout · Caregiver burden · Mental health · Psychological intervention · Qualitative research · Respite care · Autism Spectrum Disorder Research · Down syndrome and intellectual disability research · Family and Disability Support Research
Essentials of interpretative phenomenological analysis.
Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay
Parenting Stress in Mothers and Fathers of Toddlers with Autism Spectrum Disorders
Relationship between caregiver burden and basic and instrumental activities of daily living among compound and noncompound caregivers
Mothering children with developmental disabilities
Is anybody there? Informal supports accessed and sought by youth from foster care
Living in a World of Our Own
| Citation velocity | historical |
|---|---|
| Highly cited | No |