Objectives:It remains unclear how much parents with ADHD benefit from standard parenting interventions such as behavioral parent training (BPT). Our objective was to systematically review the literature on BPT aimed at adults with ADHD. As few studies with this focus were identified, we exploratively broadened our scope to quantitatively combine and qualitatively analyze studies of behavioral parenting interventions reporting parental ADHD characteristics.

Method:A systematic review was conducted of studies evaluating BPT for (targeting) parents with ADHD. The broader literature was explored through meta-regressions and qualitative content analysis.

Results:In the systematic review, five studies focusing on parents with ADHD were identified, including two randomized controlled trials. These studies used different strategies to facilitate parents’ BPT implementation: treating the parents’ ADHD or adapting the BPT itself for adults with ADHD. The number of studies was too small to meta-analyze but narratively suggested that BPT delivered with consideration of parental ADHD functioning and needs can be associated with, for example, increased positive parenting skills. None of our main meta-regressions (5–14 studies) associated parental ADHD with BPT outcomes beyond the trend level. The qualitative literature analysis (54 reports) suggested several ways to adapt the contents and delivery of BPT for parents with ADHD and their contexts.

Conclusion:This study highlights the potential of tailoring BPT to adults with ADHD. It also emphasizes the need for further research to determine the efficacy of BPT for parents with ADHD and to identify which BPT-related, individual, and contextual factors influence their BPT engagement and outcomes.

Pediatric acute-onset neuropsychiatric syndrome (PANS) is a relatively new diagnosis, characterized by an abrupt anddramatic onset of obsessive-compulsive disorder together with neuropsychiatric symptoms. This sudden onset ofsymptoms that occurs within 24–48 h presents tremendous challenges for the affected children and their immediate familymembers. Currently, research on the experiences of siblings of children with PANS is lacking. This study exploredsiblings’ perspectives on living with brothers and sisters with PANS, and their perceptions of own ability and availableresources to manage challenging situations. Nine siblings of children with PANS, aged 10–17 years, participated in semistructured interviews. Informed by Transactional Theory, a combined deductive-inductive approach to qualitative contentanalysis was used for analyzing the data. The findings illuminate that PANS has considerable impact on the lives ofhealthy siblings who experienced fear of aggression and unpredictability of their siblings’ behavior; they felt that theirbasic needs as well as social and emotional needs were often neglected. The results also showed that siblings lackedformal knowledge about PANS and had only a limited number of strategies to cope with stressful situations. However,peers in similar situation were a source of emotional support. Practical implications include the need for development ofcommunity-based, family-centered support programs to reduce the impact of PANS on healthy siblings’ well-being.Directions for further research are outlined.

Background: Vygotsky’s groundbreaking research in the field of defectology (called special education and special psychology in today’s Russia) conducted 100 years ago is of high relevance for contemporary special educational research and practice. Vygotsky argued that children who experienced difficulties due to disability develop differently compared to their typically developing peers, and, therefore, he questioned the use of reduced curricula and slower learning pace implemented in special schools for these learners at that time (Vygotsky, 1929). However, Vygotsky’s cultural-historical theory and his work in defectology have not attracted as much interest among researchers in the field of special education in Western countries as it has in other countries (Stetsenko & Selau, 2018). Yet, recent research indicates that Vygotsky’s ideas have proven to be a useful framework to understand what educational practices can be created to promote deaf students’ optimal academic achievement and well-being (Willicheva & Hall, 2023). Less is known about how the cultural-historical theory has been used in research and educational practice for students with intellectual disabilities (ID). Therefore, there is a need to understand whether and how the cultural-historical theory has been used to advance the field of special educational research and educational practice to meet the needs of students with ID nationally and internationally. Research Questions: 1. What type of research problems did researchers study using the cultural-historical theory regarding special education and students with ID? 2. What methodological approaches did researchers use in special and inclusive educationalresearch regarding students with ID based on the cultural-historical theory? 3. What is the trajectory and geographic representation of the identified research? 4. What publication outlets did the researchers publish their study results? Method: We conducted a systematic literature review aimed at identifying and synthesizing available peer reviewed, cultural-historical research studies conducted with children and youth (aged 0-20) with intellectual disabilities in educational settings. Studies published either in English, Russian or Swedish were included. Four electronic databases of Education Resources Information Center (ERIC), PsycINFO, PubMed, and Scopus were used for systematic search of literature. In addition, we handsearched several academic journals, for example, Cultural-Historical Psychology, Journal of Applied Research in Intellectual Disabilities, Life Span & Disability, Mind, Culture, and Activity, and Learning, Culture and Social Interaction. The search for peer-reviewed literature was conducted between June 2024 and January 2025. The initial search in the databases resulted in 1307 records; the hand-search in academic journals resulted in few records. Using the inclusion criteria, the full-text of 39 studies were jointly assessed for eligibility. Of these 39 articles, 37 were in English and two in Russian. Results: Our preliminary results demonstrate that the main topics were inclusion and participation, scaffolding and mediating tools, and compensatory aspects of education. The majority of the included studies employed qualitative research design using case study methodology, interviews, participant observations of classrooms, and formative interventions. Most case studies were conducted with few students and their teachers and special teachers. Some studies also included parents. The trajectory of the published research over time revealed that during the period between 1990s and 2024. Geographically, the identified research articles represented only a few countries. References: Lubovsky, D. V. (2024). The development of the principles of cultural-historical theory in special education and psychology. Cultural-Historical Psychology, 20(3), 126-135.http://doi.org/10.17759/chp.2024200313 Vygotsky, L. (1929). Sobranie sochineni. Tom 2. Osnovy defektologii. (Engl. transl., Fundamental problems of defectology. In The collected works, vol. 2.). Stetsenko, A. & Bento, S. (2018). Vygotsky’s approach to disability in the context of contemporary debates and challenges: Charting the next steps (Presentation for the “Special Issue – Vygotsky’s Defectology”. Educação (Porto Alegre), 41(3), 325-333. Willicheva, K. & Hall, W. C. (2023). From vicious circles to virtuous cycles: Vygotskian-inspired conclusions for biomedicine and deaf education. American Annals of the Deaf, 168(1), 162–176.

Introduction: Compared to other countries, Sweden did not introduce sudden lockdowns and school closures during the COVID-19 pandemic. Instead, the country chose a less restrictive approach to managingthe pandemic, such as staying at home with any symptoms of cold orCOVID-19, washing hands, and maintaining social distancing. Preschools and compulsory schools remained open. In this context, limited evidenceexists about how Swedish families of students with special educationalneeds and disabilities (SEND) experienced collaboration with school professionals to support their children during the COVID-19, and how the pandemic affected parents’ perceptions of quality of their family life. The present study investigated parental perceptions of satisfaction with family-school collaboration and with family quality of life during the COVID-19 pandemic.

Methods: Twenty-six parents of students with SEND who attended general lower secondary schools (grades 7-9) completed a survey using three measures: the demographic questionnaire, the Beach Center Family Quality of Life scale (FQOL), and the Family-School Collaboration scale – the adapted version of the original Beach Center Family-Professional Partnership Scale. Descriptive statistics, Pearson correlations were used to analyse data.

Results: Parents felt less satisfied with family-school collaboration related to child-oriented aspects; they were least satisfied with their emotional well-being aspect of family quality of life. Strong, significant and positive associations were found between family-school collaboration and disability-related support aspect of FQOL.

Discussion: The findings point to the importance of family-schoolpartnerships in promoting students’ positive school achievements, and inenhancing FQOL. The findings have practical implications for professional development of pre- and in-service teachers within the existing curricula of teacher preparation programs. Implications for further research are discussed given the study’s small sample size and challenges in recruitmentof participants.

Very little is known about the status of autism research in Central Asia. The purpose of this scoping review was to examine the scope and focus of the peer-reviewed research studies conducted with autistic people and their families in five Central Asian countries—Kazakhstan, Kyrgyzstan, Tajikistan, Turkmenistan, and Uzbekistan. The electronic databases of EBSCO Host and Web of Science were used for systematic search of literature. Eleven articles that met eligibility criteria were included in the review and analyzed for topics and research areas outlined in the Interagency Autism Coordinating Committee Strategic Plan. Ten of these studies were conducted in Kazakhstan and one in Uzbekistan using qualitative, quantitative, and mixed-methods research designs. Five of the seven research areas—Diagnosis, Biology, Risk Factors, Services, and Treatment and Interventions—were represented in these studies, while there were no studies identified in the areas of Lifespan Issues or Infrastructure and Surveillance, highlighting a gap in research. None of the studies reported co-authorship of scientists from Central Asian countries. The review identified knowledge gaps and research needs to guide future research in autism in Central Asia to address the needs of autistic individuals and their families living in this region.

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

Background

Research suggests that families’ knowledge and cultural perceptions of autism spectrum disorder (ASD), and beliefs about its etiology and prognosis, can affect parents’ recognition of the first signs of autism in their children and influence help seeking and treatment decisions.

Objective

This study investigated explanatory models of autism among parents of young children with ASD in the multicultural context of Sweden.

Method

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’

Results

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.

Conclusion

The results demonstrate the utility of the CFI’s Explanatory Model supplementary module in autism research. Implications for clinical practice are discussed.

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.

Children with autism spectrum disorder (ASD) have shown high variability in learning outcomes in response to evidence-based interventions, suggesting a need for individualization of intervention programmes for each child and his/her family. To explain this variability and develop effective intervention strategies research suggested focusing on identification of important contextual factors that might influence the effectiveness of a specific intervention for each child such as family cultural characteristics and characteristics of service settings and systems. The overarching aim of the thesis was to identify and describe proximal and distal environmental factors and processes affecting implementation and provision of interventions and services for young children with ASD and their families within the context of the Swedish support system. Two theoretical models guided the research project: Bronfenbrenner’s bioecological model of human development and Wachs’s multiple-influences model of individual variability. The specific objectives addressed using a mixture of qualitative and quantitative methods were: (i) to investigate the scope of reporting ethnicity and other cultural factors in research publications by Swedish scholars involved in empirical research in ASD in children and youth (Study 1); (ii) to explore perceptions of autism, beliefs about its causes, and treatment preferences expressed by parents of children with ASD from culturally, ethnically and linguistically diverse backgrounds (Study 2), and (iii) to explore grandparents’ perceived needs in relation to having a young grandchild with ASD (Study 3).

The results of data triangulation across the three studies showed that within the context of the Swedish support system, three proximal environmental factors were associated with identification of ASD in young children and families’ use of services and interventions before and after the child was diagnosed with ASD. These were parents’ belief systems (including perceptions about child’s autism, help-seeking behaviours, and treatment preferences); the role of preschool teachers, and the role of other service providers, such as healthcare professionals. Data triangulation singled out seven groups of distal environmental factors: beliefs of extended family; family cultural, ethnic and linguistic background; family socio-economic characteristics (occupation and education level); Swedish formal support system enacted through various legislative acts; international laws and regulations; information sources (mass media and social media), and conceptualization and clinical definition of ASD (as reflected in DSM and ICD classifications). Findings also highlight the importance of taking into consideration of role of ASD researchers as an additional distal environmental factor affecting implementation of interventions and services for culturally and linguistically diverse children with ASD and their families.

The results of the studies provide insights into understanding of families’ belief systems about ASD causes, treatment preferences, and needs that are essential for planning and provision of family-level early interventions for children with ASD in the cultural context of Sweden. Implications for practice and future research are discussed.