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Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) is a relatively new diagnosis characterized by an abrupt and dramatic onset of obsessive-compulsive disorder (OCD), together with neuropsychiatric symptoms. Very little research has been done to understand the experience of being a parent of a child with PANS. The current study aimed to explore aspects related to parental stress in parents of children with PANS. The study employed in-depth semi-structured individual interviews with 13 parents of children diagnosed with PANS. Parents were recruited via an announcement on the websites of patient organizations, and in waiting rooms at child medical clinics. An inductive qualitative content analysis approach was used as a guide for analysis of data. The analysis of interviews identified five categories of parents' experiences of stress related to: (1) being effected by the symptoms; (2) experiencing the symptoms over and over again; (3) having no control; (4) obtaining medical treatment is challenging; and (5) managing problems. The results are discussed in relation to the Transactional Theory of Stress and Coping. the study illuminates how parents' perceptions of the child's symptoms, parents' strategies for managing problems, as well as experiences related to healthcare providers, may increase or decrease parental stress.

This study investigated explanatory models of autism among parents of young children with ASD in the multicultural context of Sweden. Seventeen parents from diverse cultural, ethnic and linguistic backgrounds participated in semi-structured interviews. A deductive approach to qualitative content analysis was used to analyze data. Five domains of the Explanatory Model supplementary module of the Cultural Formulation Interview (CFI) were used as coding categories, operationalized as 'Parents' understanding of autism'; 'Autism prototypes'; 'Causal explanations'; 'Course of autism', and 'Help seeking and treatment expectations' The results showed that parents' prior knowledge of autism and experience of young children's typical developmental trajectories, as well as the opinions of children's grandparents and preschool teachers, affected symptom recognition and help seeking. There were differences in parents' explanatory models before and after ASD diagnosis. Initial interpretations of the disorder included medical conditions and reaction to environmental influences, while genetic, supernatural/religious factors, and vaccinations were mentioned as definite causes after obtaining a clinical diagnosis. Parents also held multiple explanatory models, influenced by the views of family members and information obtained from media or from health care professionals. Parents' treatment decisions included use of available state-funded support services, and complementary and alternative treatments. The results demonstrate the utility of the CFI's Explanatory Model supplementary module in autism research. Implications for clinical practice are discussed.

Psychoeducation is a recommended first-line intervention for transition-aged autistic youth, but it has not been previously evaluated in an internet-delivered format. SCOPE (Spectrum Computerized Psychoeducation) is an 8-week individual, internet-delivered, therapist-supported psychoeducative intervention. This study aimed to investigate the effectiveness of SCOPE through a 3-armed randomized controlled trial. The intervention aims to increase participants' understanding of autism and, in doing so, increase their quality of life (QoL). SCOPE was codeveloped with clinicians and autistic young adults. It contains 8 autism-related modules, each with (1) text describing the module topic, (2) four video vignettes with recurring characters who describe their lives and perspectives on the module topic, (3) a list of neurotypical characteristics related to the module's topic, and (4) self-reflection using 3 or 4 questions about the module topic, answered by multiple-choice bullets and voluntary open-ended written comments. Participants were randomized (2:1:1) to SCOPE, an active control (web-based self-study), or treatment as usual (TAU). The primary outcome was participants' autism knowledge, assessed using the Autism Spectrum Disorder Quiz, and secondary outcomes included acceptance of diagnosis, QoL, and symptoms of mental health problems. All outcomes were assessed at the baseline, postintervention, and 3-month follow-up time points, using mixed-effects models to assess change in outcome measures across time points. Between 2014 and 2020, a total of 141 participants were randomized to 1 of the 3 treatment arms. The SCOPE participants had significantly greater autism knowledge gains at the posttreatment time point compared to TAU participants with a moderate effect size (d=0.47; P=.05); gains were maintained at the 3-month follow-up (d=0.46; P=.05). The self-study participants also had increased knowledge gains compared to TAU participants at the posttreatment time point with a moderate effect size (d=0.60; P=.03) but did not maintain these gains at the 3-month follow-up, and their autism knowledge scores returned to baseline (mean change score: -0.13, 95% CI -1.20 to 0.94; P=.81). In addition, SCOPE participants reported improved QoL at the postintervention (d=0.37, P=.02) and 3-month follow-up time points (d=0.60; P=.001), compared to the combined controls. The gained autism knowledge was not mirrored by changes in symptoms of anxiety or depression. Effective internet-delivered interventions may facilitate first-line service access to individuals who are unable or unwilling to use traditional health care interventions or who live in geographically remote locations. Additionally, an intervention such as SCOPE could impart and sustain the knowledge gained through psychoeducation in transition-aged autistic youth. For future research, qualitative studies could further our understanding of the lived experiences of intervention participation and outcomes after internet-delivered psychoeducation. ClinicalTrials.gov NCT03665363; https://clinicaltrials.gov/study/NCT03665363.

Little is known about needs of grandparents of young children with autism in family and community settings. This study investigated perceived needs of grandparents of preschool-aged children diagnosed with ASD in the cultural context of Sweden. Participants were 120 grandparents of children enrolled into autism intervention programs provided by the public disability services in Stockholm. The Grandparents’ Needs Survey and the SDQ Impact supplement were used to collect data. Grandparents expressed most needs in topic areas of information and childcare. No significant relations were found between grandparents’ demographics and perceptions of needs; grandparents’ needs were predicted by their perceived burden. The findings provide insight into understanding of grandparents’ needs essential for planning and provision of quality family-centered early intervention services.

[This corrects the article DOI: 10.2196/49305.].

In the present study, a didactic perspective was used to examine collaborations and negotiations between preschools and habilitation centres concerning intensive behavioural interventions for children with autism spectrum disorders in inclusive settings in Swedish preschools. The didactic triangle was used as the theoretical tool to analyse information derived from a qualitative case-study in two preschools exemplifying 'high quality practice'. Direct content analysis was used to analyse data with a focus on the child, the pedagogue, and the subject. Data were collected through multiple sources during a 12-month period, including observations and interviews. A model of aspects of the collaboration between preschools, habilitation centres, and families was conceptualized based on the didactic triangle: the 'pedagogue cornerstone' encompassed competence, attitudes, and collaborations; the 'child cornerstone' encompassed learning in relation to specific goals; the 'subject cornerstone' encompassed both subjects shared with typically developing peers and subjects related to the specific challenges. In addition, the preschool principals were described as important. Different factors in relation to tensions and collaborations between organizations concerning inclusive education were elaborated. Implications for preschools, inter-organizational collaboration, and future research are discussed.

This initial open feasibility trial reports on feasibility and preliminary effectiveness of the manualized, group-based psychoeducational intervention for grandparents of preschool-aged children with ASD provided by the outpatient habilitation services in Stockholm, Sweden. One hundred and twenty non-custodial grandparents participated in a 6-h intervention program. The study demonstrated good feasibility: 114 (95%) grandparents completed both pre- and post-intervention measures and evaluations and reported high intervention acceptability. The results also indicated that grandparents increased their knowledge about ASD from pre-intervention to post-intervention, gained skills about strategies of supporting their grandchildren and adult children, and appreciated the opportunity to meet and share experiences with other grandparents. Follow-up with a randomized controlled trial design is needed to firmly establish efficacy of this intervention.

In Sweden, young autistic children typically attend community-based preschool programs, which may not be adapted to their needs. In the current study, stakeholders to autistic children receiving Early Intensive Behavioral Intervention were interviewed following a quasi-randomized study (#NCT03634761) aimed at improving the preschool program quality using the Swedish version of the Autism Program Environment Rating Scale (APERS). Stakeholders provided their perceptions and experiences concerning key factors for high quality preschool programs as well as well as their experiences of the abovementioned APERS study. Applying thematic analysis, stakeholder groups differed in what they emphasized, but all highlighted staff’s competence, children’s inclusion and participation, collaboration, and the learning environment as key program areas that had been positively influenced by the APERS-based intervention.

Increasing rates of autism spectrum disorder (ASD) and younger age at diagnosis pose a challenge to preschool intervention systems. In Sweden, most young autistic children receive intervention service in community-based preschool programs, but no tool is yet available to assess the quality of the preschool learning environment. This study adapted the Autism Program Environment Rating Scale Preschool/Elementary to Swedish community context (APERS-P-SE). Following translation and a multistep modification process, independent experts rated the content validity of the adaptation. Findings indicate high cross-cultural validity of the adapted APERS-P-SE. The cultural adaption process of the APERS-P-SE highlights similarities and differences between the American and Swedish preschool systems and their impact on early ASD intervention.