A scoping review of autism research conducted in Central Asia: Knowledge gaps and research priorities.

LAY ABSTRACT: Very little is known about the status of autism research in Central Asia. Through the library databases, we identified and reviewed 11 scientific studies conducted with autistic people and their families in five Central Asian countries-Kazakhstan, Kyrgyzstan, Tajikistan, Turkmenistan, and Uzbekistan. Of the 11 studies, 10 were conducted in Kazakhstan and 1 in Uzbekistan. Within these limited number of research studies, different topics such as diagnosis, risk factors of autism, biology, and various service and intervention areas were addressed. We identified several knowledge gaps and research priorities to address the needs of autistic people, their families, and professionals in Central Asia.

Group Psychoeducational Intervention for Grandparents of Young Children with ASD: An Open Feasibility Study.

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.

Culturally diverse families of young children with ASD in Sweden: Parental explanatory models.

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.

Needs of Grandparents of Preschool-Aged Children with ASD in Sweden.

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.

The international classification of functioning, disability and health--children and youth (ICF-CY): testing its utility in classifying information from eco-cultural family interviews with ethnically diverse families with children with disabilities in Kyrgyzstan.

PURPOSE: The objective of this study was to test the utility of the International classification of functioning, disability and health--children and youth's (ICF-CY) Environmental Factors component by classifying family interview data from two ethnically and culturally diverse--Kyrgyz and Uzbek--families that have children with various types of disabilities in Kyrgyzstan, Central Asia. METHODS: The eco-cultural family interview (EFI) was used to interview four Kyrgyz and four Uzbek families. The obtained data were analysed by using manifest content analysis; identified units of meaning named as 'EFI items' and 'EFI concepts' were then linked to the ICF-CY's codes by application of ten linkage rules. RESULTS: The analysis of transcribed interviews identified 669 EFI items and 745 EFI concepts. The linking of EFI items to the ICF-CY showed: 92 EFI items and concepts were linked to nd (not definable); 104 items were linked to nc (not covered by the ICF-CY); 15 items were categorised as pf (personal factors); 21 items were linked to categories found in Activities and Participation; and 3 were linked to Body Functions components. The rest of EFI items and concepts were linked to categories of the Environmental Factors component. CONCLUSION: The codes included into Chapters 1, 2 and 5 of the ICF-CY environmental component can be easily assigned to the relevant EFI items. There is a necessity to add more codes in Chapters 3 and 4 of the Environmental Factors component, and the inclusion of a separate component of Personal Factors into the classification is suggested.