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Objective: This study applied the Family Systems Illness Model to examine how child disorder severity influences mental health in mothers and fathers of children with chronic (mainly developmental) disorders (CD)., Methods: We measured parental mental health and perceived child disorder severity among 204 mothers and 125 fathers of 220 children with CD and compared the mental health scores with norms. We analyzed how much of the variance in parental mental health was explained by child disorder severity, including discrepancy between maternally and paternally perceived severity., Results: Compared to norms, we found elevated mental health problems in both mothers ( d  = 0.45) and fathers ( d  = 0.20) of children with CD. Mothers had higher scores than fathers on both mental health problems ( d  = 0.63) and severity ( d  = 0.43). Perceived disorder severity was similarly associated with mental health problems for mothers (β = 0.23) and fathers (β = 0.34). Discrepancy between maternal and paternal perceived disorder severity did not influence parental mental health., Conclusion: Findings suggest gender-specific challenges in parenting children with CD. Subjective perception of disorder severity plays a substantial role for parental mental health., Innovation: This comparative study of mothers and fathers contributes to a predominantly mother-focused field., Competing Interests: The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: Erica Zahl reports financial support was provided by Norwegian Women's Public Health Association. Krister W. Fjermestad reports financial support was provided by Research Council of Norway. If there are other authors, they declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (© 2024 The Authors.)

Lay Abstract: In this study we have asked a group of autistic young adults to describe what is important for their quality of life. The 14 participants (aged 21-29 years) were recruited from a 10-year follow-up study of autistic people. During interviews, our participants described the importance of having relationships with family, friends and pets. Having meaningful activities and being able to immerse themselves in particular interests was also reported to be important for a good quality of life. Interests had also guided their choice of what to study and what to do for work. They also spoke of how communication problems with professionals, bullying and sensory and emotional overload could have a negative impact on quality of life. Future interventions should focus on how professionals can help autistic people to connect to people/animals and meaningful activities, as the participants described this as important for having a good quality of life. These findings may be helpful in enhancing how passions and interests can be seen as opportunities for both academic and work careers for autistic people. Future research and interventions should also look at the communication barriers between autistic people and professionals, and how two-way understanding can be improved., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Our objective was to examine the factor structure of the Experiences in Close Relationships-Relationships Structures (ECR-RS), an attachment-theory based relationship measure, in at-risk sample comprising siblings of children with chronic disorders. Psychometric studies with general populations have demonstrated that the ECR-RS comprises two factors, representing anxiety and avoidance in close relationships. The sample comprised 103 siblings (M age = 11.5 years, SD = 2.2, range 8 to 16 years) of children with chronic disorders and their parents. The siblings completed a 9-item version of the Experiences in Close Relationships-Relationships Structures (ECR-RS) about their relations with mothers and fathers that was analyzed with confirmatory factor analysis. We examined construct validity using correlations between sibling social functioning, measured with the Strengths and Difficulties Questionnaire, and parent mental health, measured with the Hopkins Symptom Checklist-90-Revised. The ECR-RS comprised two factors, anxiety and avoidance, in line with previous studies. Both factors demonstrated significant overlap with sibling social functioning, but not with parental mental health. We conclude that the ECR-RS comprises two factors, anxiety and avoidance, that are related to siblings' social functioning. The ECR-RS can be used as a psychometrically sound measure of relationship anxiety and avoidance in families of children with chronic disorders.

Background: Adolescents with rare genetic disorders represent a population that can be at risk in psychosocial terms. Despite its importance, the association of autism traits and social withdrawal in behavioral and emotional problems in adolescents with rare genetic disorders remains understudied., Aim: The study aimed to empirically examine the clinical characteristics of adolescents with rare genetic disorders with a behavior theory-driven approach., Method: We investigated the behavioral and emotional problems and current and lifetime autistic traits in a sample of 93 Norwegian adolescents (M age = 13.2 years, SD age = 2.4, range age 10-17, 62.4% females, 37.6% males) with various rare genetic disorders. The adolescents were investigated cross-sectionally utilizing standardized psychometric questionnaires rated by their parents., Results: More current and lifetime autistic traits and social withdrawal were all associated with more internalizing problems. Further analyses demonstrated that social withdrawal partially mediated the positive association between current autistic traits and internalizing problems. In contrast, social withdrawal fully mediated the positive association between lifetime autistic traits and internalizing problems., Conclusion and Implications: Our results demonstrate important characteristics of adolescents with rare genetic disorders that may guide clinicians and future interventions. Social withdrawal may be prodromal to internalizing problems such as anxiety and depression. Thus, clinically addressing social withdrawal can represent a means to prevent internalizing problems in adolescents with rare genetic disorders and autistic traits., Competing Interests: Declaration of Competing Interest All authors declare that they have no competing interests., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)