Development, psychometric evaluation, and factor analysis of an instrument measuring quality of life in autistic preschoolers.

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.

Psychometric validation of the French version of the PedsQLTM4.0 generic health-related quality of life questionnaire for 2-4-year-old children.

The Pediatric Quality of Life Inventory version 4.0 (PedsQLTM4.0) is an internationally recognized, generic, health-related quality of life (HRQoL) questionnaire, but its proxy 2-4-year-old version has not been validated in France. This study proposes a psychometric validation of this tool for French children aged 2 to 4 years and 11 months. A total of 220 parents of typically developing children participated. Acceptability was explored. Internal consistency was tested using Cronbach's alpha. Factor structure was tested using an exploratory structural equation modeling (ESEM). Risk of bias was assessed regarding gender and age effect on HRQoL using Student's t test. Except for school functioning, compliance was good (< 2.9%). No floor effects were observed, but ceiling effects were found for all scores. The total score had good internal consistency (Cronbach's α = .82). The Cronbach's α of each subscale was between .53 and .71. Factor analysis rejected the original 4-factor structure and revealed an alternative 2-factor structure. The total score and emotional scale score did not appear to be sensitive to gender or child age.  Conclusions: The PedsQLTM4.0 generic HRQoL questionnaire presents good psychometric properties, regarding acceptability and reliability. For use among French children aged 2 to 4 years and 11 months, we recommend retaining the total score and the emotional scale score.

A systematic review of longitudinal changes in school burnout among adolescents: Trajectories, predictors, and outcomes.

INTRODUCTION: School burnout (SBO) is a public health issue with possible long-term consequences that occurs among developing adolescents. To design prevention policies, SBO's causes and consequences must be established. Moreover, a better understanding of its development might help identify key moments for interventions. Longitudinal studies can reveal whether SBO changes or remains stable over time and can track how its different dimensions develop. They can also clarify the distinction between the predictors and outcomes of SBO. METHODS: This systematic review follows PRISMA guidelines and aims to synthesize knowledge about the development of SBO and its predictors and outcomes. We queried databases for articles published between January 2002 and February 2021 that use a quantitative assessment of SBO and have longitudinal designs using students in secondary education. RESULTS: Forty-three articles representing 48 studies were included in this review. The most-documented risk factors are female gender and high school academic track. Exhaustion is the first dimension of SBO to develop. The most-documented risk factors are female gender and high school academic track. Relationships with parents serve as a protective factor. Outcomes of SBO include lower engagement at school, impaired identity development, and lower satisfaction with life. Complex relationships are found between SBO, problematic use of internet, problematic use of social media, and depressive symptoms. The three are likely to be caused by SBO but probably develop in vicious cycles. CONCLUSION: More research on the organizational factors influencing SBO in diverse educational systems is needed.

Searching for What Really Matters: A Thematic Analysis of Quality of Life among Preschool Children on the Autism Spectrum.

Quality of life (QoL) is an essential measure when assessing health interventions. Most early interventions for preschool children on the spectrum evaluate the effects on autism symptoms. However, researchers increasingly believe that good interventions should also improve the QoL of these children. Domains of QoL among preschool children on the autism spectrum have not previously been researched. We interviewed adults on the spectrum to explore early childhood experiences that made their lives satisfying. Our data revealed four major themes: interests, environmental regularity, sensory differences and social interactions. This study provides the first insights on aspects of life important to pre-schoolers on the spectrum. Findings will contribute to developing items for a measure of QoL among this population.

Couples' Experiences of Parenting a Child After an Autism Diagnosis: A Qualitative Study.

After a child is diagnosed with autism, parents' relationships are impacted as they reorganize their daily lives to support their child's specific needs. A better understanding of parenting couples' adaptation is needed to accompany them during this period. This qualitative study explored couples' experiences after their child's autism diagnosis. An inductive thematic analysis among ten couple interviews (N = 20) revealed three key themes: emotional experiences, external support, and adaptation. Overall, the quality of couples' relationships before having a child influenced their relationship after the diagnosis. In general, parents presented complementary coparenting roles, while different opinions about how to raise the child strained their relationship. Helping parents adapt to a diagnosis together could prove to be important for future interventions and research.

Facilitators' perspectives on a psychoeducational program for parents of an autistic child.

LAY ABSTRACT: The recent increase of diagnosed cases of autism spectrum disorders has led to a considerable rise in the demands for autism-related services and interventions. Caring for an autistic child can be perceived as an enrichment, which coexists with stress in parents. Parents express the need to access relevant information about their child's difference, and parent support interventions appear to respond effectively to this demand, as they are knowledge-focused and offer indirect support to the child. The aim of this study was to capture the subjective experience of facilitators who implemented a psychoeducational program called Beyond PDD: Parental Skills within My Reach. This program is based on the acknowledged fact that parents of autistic children play a central role in their child's development. Its main goal is to help parents of autistic children under the age of 8 to identify, develop, and update their parenting competences. This program broaches different topics: (1) specific features of an autistic child, (2) post-diagnostic parental adjustment, (3) communication and social relationships, (4) importance of providing the child with a structured environment, and (5) parental emotions and perceptions that impact everyday life. Structured interviews of the facilitators provided insight on institutional support, issues related to the program itself, required and/or recommended professional background, personal experience and competences, and difficulties linked to recruitment and research criteria. Recommendations aiming to enhance program implementation and delivery were then created using facilitators' feedback on these aspects.