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Caring for a Child with Autism Spectrum Disorder and Parents’ Quality of Life: Application of the CarerQol

TitleCaring for a Child with Autism Spectrum Disorder and Parents’ Quality of Life: Application of the CarerQol
Publication TypeJournal Article
Year of Publication2014
AuthorsHoefman, R, Payakachat, N, van Exel, N, Kuhlthau, KA, Kovacs, EA, Pyne, JM, J. Tilford, M
JournalJournal of Autism and Developmental Disorders
Pagination1-13
Summary

Lead Author
Renske Hoefman

Study Aims and Objectives
To measure the impact that providing care for a child with autism spectrum disorder (ASD) has on parents and to validate the use of the Care-Related Quality of Life instrument on parents who have children with an ASD diagnosis.

Methods- Sample, Procedure, Study Measures, Analysis
224 families who had participated in the Autism Speaks Autism Treatment Network Registry filled out two questionnaires, one as a proxy for their child- The Child Health Questionnaire- and another asking them to report on their own health. This included the burden of caregiving, care situation, and background characteristics such as gender, age, education status, and income.

Results- Main Findings
Of parents surveyed, many had issues with mental and physical health problems, with 40% reporting depressive symptoms. Financial burdens and issues combining care tasks with daily activities were also common. Despite these difficulties, 97% of parents reported deriving fulfillment from providing care and most had an overall happiness of 7 on a 0-10 scale. This study also supported the validity of the Care-Related Quality of Life instrument in reporting the impact of care giving on parents who have children with ASD.

Conclusion- Summary Statement
While research has been done regarding the health and quality of life of children with ASD, insight into the parent burden and experience of caregiving for this population is lacking. This study showed that while parents find fulfillment in providing care for their children with ASD, they also experience higher levels of mental and physical health problems and are more likely to have financial hardships.

PubMed ID24577786