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

• Published in: PloS one 2020-07, Vol.15 (7), p.e0236329
• Main Authors: Zakirova-Engstrand, Rano, Hirvikoski, Tatja, Westling Allodi, Mara, Roll-Pettersson, Lise
• Format: Article
• Language: English
• Subjects: Autism; Behavior; Biology and Life Sciences; Children; Children & youth; Chronic illnesses; Content analysis; cultural formulation; Decisions; Demographic aspects; Diagnosis; Etiology; Families & family life; Health care; Health literacy; Health services; Medicin och hälsovetenskap; Medicine and Health Sciences; Modules; parental explanatory models; Parents; Parents & parenting; Patients; Pediatric research; People and Places; Pervasive developmental disorders; Professionals; Prototypes; Qualitative analysis; Recognition; Social aspects; Social Sciences; Special Education; specialpedagogik; Supervision; Support services; Surveys; Sweden
• ISSN: 1932-6203; 1932-6203
• DOI: 10.1371/journal.pone.0236329

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.