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1.
Encephale ; 2024 Mar 23.
Article in English | MEDLINE | ID: mdl-38523027

ABSTRACT

OBJECTIVES: The primary objective of this study was to determine the effects of permanent, mediated parental presence during all autism spectrum disorder diagnostic evaluations on parental adjustment (perceived parental stress and sense of parental competence) compared with procedures that traditionally only involve parents in pivotal periods of the diagnosis. The level of satisfaction with the diagnostic procedure and parents' needs were also evaluated to complete this first objective. The secondary objective was to assess the effects of psychosocial, individual, and contextual variables on perceived parental stress and sense of parental competence. METHODS: The total sample of 49 parents was divided (using simple randomization) into two subgroups, each for a different procedure. Participants were met with once before the first consultation and once after. They completed self-reported questionnaires on parental stress, sense of parental competence, satisfaction with the procedure, social support, locus of control, and appraisal of life events. Statistical analysis was conducted using SPAD and SPSS software. RESULTS: There was no difference between the two groups in the variables assessed. Satisfaction with the diagnostic procedure was high in both groups, but parents highlighted that they had important needs following the diagnosis. The child's level of autonomy, the presence of disruptive behaviors, and satisfaction with social support were found to be important for determining parental adjustment. CONCLUSIONS: Several hypotheses may explain the lack of differences between the two groups, including that parents may not yet have been in a position to benefit from the procedure aimed at integrating them. Our suggestion is that professional interventions should focus on improving the child's autonomy and helping the parent to develop a satisfactory support network. Finally, parents' needs for the post-diagnosis phase should be given greater consideration, particularly in future research.

2.
Int J Methods Psychiatr Res ; : e2002, 2023 Dec 22.
Article in English | MEDLINE | ID: mdl-38133582

ABSTRACT

INTRODUCTION: Early interventions for autistic children should target their quality of life (QoL) but require adapted measures. The association of a child's temperament and parental characteristics with the QoL of autistic children remains unknown. METHODS: We constructed an autism module based on a thematic analysis, a Delphi survey with experts, and a pre-test with parents to be completed alongside the proxy version of the PedsQL 4.0. We explored compliance, responsiveness, internal consistency, convergent validity, and factor structure with 157 parents of autistic preschool children. We examined the association between child and parental characteristics with the QoL of autistic children using correlation analysis, principal component analysis, hierarchical ascending classification, and linear regression. Sociodemographic information was collected via multiple choice questions, autism severity via Autism Diagnostic Observation Schedule (ADOS) scores, and parental acceptance and child's temperament via the Acceptance and Action Questionnaire and the Emotionality, Activity, and Sociability. RESULTS: An autism module comprised of 27 items emerged. Psychometric evaluation resulted in a 24-item autism module with good internal consistency and significant convergent validity. ADOS total score was not significantly related to QoL, contrary to children's sleep issues, children's emotionality, and parental acceptance. CONCLUSIONS: The autism module is a reliable QoL proxy measure for autistic preschool children. Results suggest parental interventions targeting children's QoL.

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