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Families of young children with autism spectrum disorder in Sweden: The role of culture and intergenerational support
Stockholm University, Faculty of Social Sciences, Department of Special Education.
2019 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

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. 

Place, publisher, year, edition, pages
Stockholm: Department of Special Education, Stockholm University , 2019. , p. 128
Keywords [en]
young children with autism, system-theory perspective, culturally diverse families, parents’ explanatory models of autism, grandparents’ needs, cultural formulation, Swedish support system
National Category
Pedagogy
Research subject
Special Education
Identifiers
URN: urn:nbn:se:su:diva-172822ISBN: 978-91-7797-819-0 (print)ISBN: 978-91-7797-820-6 (electronic)OAI: oai:DiVA.org:su-172822DiVA, id: diva2:1350061
Public defence
2019-10-28, David Magnussonsalen (U31), Frescati Hagväg 8, Stockholm, 10:00 (English)
Opponent
Supervisors
Note

At the time of the doctoral defense, the following paper was unpublished and had a status as follows: Paper 2: Manuscript.

Available from: 2019-10-03 Created: 2019-09-10 Last updated: 2019-09-24Bibliographically approved
List of papers
1. Reporting of Cultural Factors in Autism Research Publications in Sweden: Application of the GAP-REACH Checklist
Open this publication in new window or tab >>Reporting of Cultural Factors in Autism Research Publications in Sweden: Application of the GAP-REACH Checklist
Show others...
2018 (English)In: Review Journal of Autism and Developmental Disorders, ISSN 2195-7177, Vol. 5, no 4, p. 390-407Article, review/survey (Refereed) Published
Abstract [en]

Systematic reporting of cultural variables in research publications is important to address disparities in diagnostics and treatment for children with ASD from diverse backgrounds. The present review examined reporting of cultural factors in ASD publications in the Swedish research context by using the GAP-REACH checklist developed by the Cultural Committee of the Group for the Advancement of Psychiatry. Thirty peer-reviewed articles published in English between 2013 and 2015 met inclusion criteria. Depending on research designs, 46% of the reviewed studies defined cultural factors using various proxies for ethnicity to describe study participants; none of the studies used the race variable; 23.3% provided rationale for inclusion of cultural factors. The checklist in its modified form is applicable within the Swedish context.

Keywords
Autism publications, Cultural factors, GAP-REACH checklist
National Category
Psychology
Research subject
Special Education
Identifiers
urn:nbn:se:su:diva-163588 (URN)10.1007/s40489-018-0147-3 (DOI)000452079900006 ()
Available from: 2019-01-11 Created: 2019-01-11 Last updated: 2019-09-11Bibliographically approved
2. Culturally diverse families of young children with ASD in Sweden: Parental explanatory models
Open this publication in new window or tab >>Culturally diverse families of young children with ASD in Sweden: Parental explanatory models
(English)Manuscript (preprint) (Other academic)
Abstract [en]

Background. Research suggests that families’ knowledge and cultural perceptions of autism spectrum disorder (ASD), beliefs about its etiology and prognosis can affect parents’ recognition of 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. 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. Results showed that parents’ prior knowledge of autism and experience with young children’s typical developmental trajectories, as well as opinions of children’s grandparents and preschool teachers influence their symptoms recognition and help seeking. There were differences in parents’ explanatory models before and after diagnostic assessments for ASD: initial interpretations included child’s 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 views of family members and information obtained from media or healthcare professionals. Parents’ treatment decisions included use of available state-funded support services, and complementary and alternative treatments.

Conclusion. Results demonstrated the utility of the CFI’s Explanatory Model supplementary module in autism research. Implications for clinical practice are discussed.

Keywords
autism, parental explanatory models, cultural formulation, Sweden
National Category
Educational Sciences
Research subject
Special Education
Identifiers
urn:nbn:se:su:diva-172823 (URN)
Available from: 2019-09-10 Created: 2019-09-10 Last updated: 2019-09-10Bibliographically approved
3. Needs of Grandparents of Preschool-Aged Children with ASD in Sweden
Open this publication in new window or tab >>Needs of Grandparents of Preschool-Aged Children with ASD in Sweden
2019 (English)In: Journal of autism and developmental disorders, ISSN 0162-3257, E-ISSN 1573-3432Article in journal (Refereed) Epub ahead of print
Abstract [en]

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.

Keywords
Grandchildren with autism, Grandparents’ needs, Sweden
National Category
Educational Sciences Neurosciences
Research subject
Special Education
Identifiers
urn:nbn:se:su:diva-172816 (URN)10.1007/s10803-019-03946-w (DOI)
Available from: 2019-09-10 Created: 2019-09-10 Last updated: 2019-09-11Bibliographically approved

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