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Perception of the burden on parents of children with Autism Spectrum Disorders : a quantitative and qualitative approach to parental experience

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Thesis

French

ID: <10670/1.2skxhv>

Abstract

Study 1 – This validation study aims to investigate the psychometric properties of the French version of the 21-item Caregiving Strain Questionnaire (FCGSQ-21), which evaluates caregivers of children with Autism Spectrum Disorder’s burden. A three-factor model was found to best fit the structure of this scale. Those factors include the objective burden as well as the internalized and externalized subjective burdens. In the present study, the FCGSQ-21’s homogeneity is excellent with a Cronbach’s alpha of .90. Study 2 –This study aims at investigating the psychological well-being of parents of children with Autism Spectrum Disorder (ASD) while comparing it to that of parents of children with Down Syndrome (SD) as well as that of parents of typically developing children (DT). Significant differences appear between parents of those different groups for perceived burden (F (2,56) = 18,34 ; p ≤ 0,001), and anxiety and depression (F (2,56) = 5,30 ; p =0,008 ; F (2,56) = 4,72 ; p = 0,013). Other significant differences are observed between parents of children with ASD and SD on all variables in this study, most notably for the sub-scale “Global Coordination of Care” (M SD = 6,7 ; ET = 1,82, M TSA = 5,24 ; ET = 1,67 ; t = 2,76, p = 0,009).Study 3 – First, the transactional integrative and multifactorial Model (TIM) adapted to parents of children with ASD was tested. Then, different profiles of parents linked to their psychological well-being in face of their child’s disorder were highlighted. It appears that dispositional optimism is an explicative variable of psychological well-being and anxiety and depression appear as mediating variables between dispositional optimism and burden perception. Three profiles of parents were highlighted. One profile of parents (n=63) displays reduced psychological well-being. The second profile (n=29) includes parents who maintained high psychological well-being. The last profile (n=75) is homogenous. Study 4 – This study aims to explore how mothers and fathers of children with ASD live with their child’s disorder. The mean comparisons between fathers and mothers highlight a higher care satisfaction, coordination and respect for mothers. Mothers also have a higher delegated dyadic coping (partner) and common dyadic coping than fathers do. The qualitative analysis revealed that fathers and mothers often do not have the same role with their child.

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