Due to lack of previous studies, we aimed at evaluating the use of the Five to Fifteen (FTF) questionnaire in adults with neurodevelopmental disorders (NDD) and in controls without NDD. The NDD group consisted of adults with autism spectrum disorder ASD (n = 183) or attention-deficit/hyperactivity disorder (ADHD) (n = 174) without intellectual disability, recruited from a tertiary outpatient clinic. A web survey was used to collect data from general population adult control group without NDD (n = 738). The participants were retrospectively rated by their parents regarding childhood symptoms, using five to fifteen-collateral informant questionnaire (FTF-CIQ). Adults with NDD had higher FTF-CIQ domain and subdomain scores than controls, and displayed similar test profiles as children with corresponding diagnosis in previous studies. Based on the FTF-CIQ domain scores, 84.2% of the study participants (93% of the controls; 64% of the adults with NDD) were correctly classified in a logistic regression analysis. Likewise, Receiver Operating Characteristic (ROC) curve analysis on FTF-CIQ total sum score indicated that a cutoff value of 20.50 correctly classified 90% of the controls and 67% of the clinical cases, whilst a cutoff value of 30.50 correctly classified 84% of the controls and 77% of the clinical cases. The factor analysis revealed three underlying components: learning difficulties, cognitive and executive functions; social skills and emotional/ behavioural symptoms; as well as motor and perceptual skills. Whilst not designed as a diagnostic instrument, the FTF-CIQ may be useful for providing information on childhood symptoms and associated difficulties in individuals assessed for NDD as adults.
Background: ADHD causes impairment in several life contexts and may increase stress and burden of care amongst family members. There is a lack of studies regarding gender inequalities in burden sharing in families of individuals with ADHD. Objective: The aim of this study was to investigate gendered burden sharing in families who were in contact with an ADHD telephone helpline in Sweden. A further aim was to identify perceived difficulties that prompted contact with the helpline. Methods: During a period of 28 months (from January 2013 to April 2015), calls were consecutively registered by psychologists manning the helpline through an anonymous digital form. After exclusion of 60 incomplete forms out of 1,410 (4%), information on 1,350 calls was analysed. Results: The analysis indicated that mothers (82.7% of all callers) had a more important role as information-coordinators for children or adolescents with ADHD, as compared to fathers (13%) or other callers (4.3%). This pattern was also observed among the calls regarding young adults with ADHD. Helpline calls primarily concerned entitlement to academic support (57.9% of calls concerning children or adolescents) and healthcare services (80.6% of calls concerning young adults and adults). Conclusion: The study concludes that a perceived lack of accessibility to and/or coordination of the school and health care services may be a major stressor for parents of individuals with ADHD. The burden of care through coordination of services and information-seeking may be especially increased in mothers of children, adolescents, and young adults with ADHD.
Parents of children with autism spectrum disorder and other disabilities report high levels of distress, but systematically evaluated interventions are few. This study aimed to evaluate the feasibility of a novel, manualized Acceptance and Commitment Therapy group intervention (Navigator ACT) in a sample of 94 parents of children with disabilities. Feasibility was measured by treatment completion, credibility, and satisfaction, and preliminary outcomes by using self-rating scales administered at the baseline, post-intervention, and follow-up. The results imply the intervention is feasible in the context of Swedish outpatient habilitation services. A preliminary analysis of the outcome measures suggests that parents experienced significant improvements in well-being. The results indicate that the treatment is feasible and should be evaluated in a randomized controlled trial.
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