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Culturally diverse families of young children with ASD in Sweden: Parental explanatory models
Stockholm University, Faculty of Social Sciences, Department of Special Education.ORCID iD: 0000-0001-5115-3785
Stockholm University, Faculty of Social Sciences, Department of Special Education.ORCID iD: 0000-0003-2396-4710
Stockholm University, Faculty of Social Sciences, Department of Special Education.ORCID iD: 0000-0002-3892-2794
2020 (English)In: PLOS ONE, E-ISSN 1932-6203, Vol. 15, no 7, article id e0236329Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
2020. Vol. 15, no 7, article id e0236329
Keywords [en]
autism, parental explanatory models, cultural formulation, Sweden
National Category
Educational Sciences
Research subject
Special Education
Identifiers
URN: urn:nbn:se:su:diva-183756DOI: 10.1371/journal.pone.0236329ISI: 000556674500045PubMedID: 32716951OAI: oai:DiVA.org:su-183756DiVA, id: diva2:1456016
Available from: 2020-07-30 Created: 2020-07-30 Last updated: 2021-11-28Bibliographically approved
In thesis
1. Families of young children with autism spectrum disorder in Sweden: The role of culture and intergenerational support
Open this publication in new window or tab >>Families of young children with autism spectrum disorder in Sweden: The role of culture and intergenerational support
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
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:nbn:se:su:diva-172822 (URN)978-91-7797-819-0 (ISBN)978-91-7797-820-6 (ISBN)
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: 2022-02-26Bibliographically approved

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Zakirova-Engstrand, RanoWestling Allodi, MaraRoll-Pettersson, Lise

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