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

L.W. ten Hoopen*, P.F.A. (Pieter) de Nijs, J. (Jorieke) Duvekot, K. (Kirstin) Greaves-Lord, M.H.J. (Manon) Hillegers, WBF (Werner) Brouwer, L (Leona) Hakkaart - van Roijen

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

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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.

Original languageEnglish
Number of pages14
JournalJournal of Autism and Developmental Disorders
Early online date1 Nov 2021
DOIs
Publication statusPublished - 2021

Bibliographical note

Acknowledgments: The Social Spectrum Study was funded by the
Sophia Foundation for Scientifc Research (SSWO project number
958). The Social Spectrum Study was conducted by the Erasmus Medical Center in collaboration with Emergis, GGZ WNB, Lucertis, Riagg
Rijnmond, and Yulius. Also, the authors gratefully acknowledge the
families that participated in the study and the graduate students and
research assistants who assisted in our research.

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