Factors contributing to higher caregiving burden in Turkish mothers of children with autism spectrum disorders

• Published in: International journal of developmental disabilities Vol. 66; no. 1; pp. 46 - 53
• Main Authors: Cetinbakis, G., Bastug, G., Ozel-Kizil, E.T.
• Format: Journal Article
• Language: English
• Published: England Taylor & Francis 01.01.2020; Routledge; Maney Publishing, Hudson Road
• Subjects: Adjustment; ASD; Autism; Autism Spectrum Disorders; Autistic children; Behavior; Behavior Rating Scales; Caregiver burden; Caregivers; caregiving burden; Child Rearing; Children with disabilities; Correlation; Correlation analysis; Demography; Developmental Disabilities; Disabilities; Disability; dyadic adjustment; Emotional Adjustment; Emotional Response; Expressed emotion; Fathers; Foreign Countries; Guidance; Life Satisfaction; Measures (Individuals); Mother Attitudes; Mothers; Parent Child Relationship; Parents & parenting; Perceived social support; Pervasive Developmental Disorders; Post-traumatic growth; Posttraumatic Stress Disorder; Predictor Variables; Psychological distress; Psychosocial factors; Psychosocial support; satisfaction with life; Severity (of Disability); Siblings; Social support; Social Support Groups; Sociodemographics; Workplaces; Turkey; ASD; dyadic adjustment; caregiving burden; satisfaction with life; expressed emotion
• ISSN: 2047-3869; 2047-3877; 2047-3877
• DOI: 10.1080/20473869.2018.1478630

The aim of this study was to explore the caregiver burden and related factors such as expressed emotion (EE), social support, life satisfaction, dyadic adjustment, post-traumatic growth, and socio-demographic characteristics of mothers with autism spectrum disorder (ASD) children. Sixty-two mothers of children with autism spectrum disorder and 60 mothers of typically developing children completed the Zarit Burden Scale, the Multidimensional Scale of Perceived Social Support, the Satisfaction with Life Scale, the Dyadic Adjustment Scale, the Expressed Emotion Scale, and the Post-Traumatic Growth Inventory. The Autism Behavior Checklist was used to examine the severity of autistic behaviors. A socio-demographic data form was applied to the subjects. Participants were recruited in Autistic Children Education Center, homes, and workplaces. Correlation analysis, independent-samples t-tests, post hoc Mann-Whitney U, and SEM tests were conducted for statistical analyses. Higher maternal caregiving burden was associated with lower life satisfaction and higher level of disability in Turkish children with ASD. Also, higher life satisfaction of mothers with ASD children was related to higher social support and dyadic adjustment, and lower EE. According to the SEM analysis, disability percentages, autism-related behaviors in children, and poor dyadic adjustment were significant predictors of caregiving burden in these mothers which in turn resulted with higher EE and poor life satisfaction. There are several studies that have investigated the distress in parents of children with developmental disabilities in general, but caregiving burden in ASD was not evaluated elsewhere in detail. These mothers need professional guidance and psychosocial support during the parenting process. Further studies that aim to investigate the whole family, including the father and the siblings, are also necessary.