Caring for Children with an Autism Spectrum Disorder: Factors Associating with Health- and Care-Related Quality of Life of the Caregivers

J Autism Dev Disord. 2022 Nov;52(11):4665-4678. doi: 10.1007/s10803-021-05336-7. Epub 2021 Nov 1.

Abstract

This study investigated the association of child, caregiver, and caregiving measurements with the quality of life (QoL) in 81 caregivers (mostly parents) of clinically referred children with autism spectrum disorder (ASD). We used the EuroQol five-dimensional (EQ-5D) questionnaire and the care-related QoL questionnaire (CarerQol) to respectively assess health-related QoL and care-related QoL. Health-related QoL was associated with the caregiver's internalizing problems and adaptive coping, explaining 38% of the variance. Parenting stress and adaptive coping were associated with the care-related QoL and explained 60% of the variance. Child variables were not associated with the caregiver's health- and care-related QoL if caregiver and caregiving variables were taken into account. Findings indicate the importance of the caregiver's mental health, coping, and parenting stress in caring for children with ASD.

Keywords: Autism spectrum disorder (ASD); Caregiver; CarerQol; Children; EQ-5D; Health-related quality of life.

MeSH terms

  • Autism Spectrum Disorder*
  • Caregivers*
  • Child
  • Humans
  • Parenting
  • Quality of Life
  • Surveys and Questionnaires