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

Abstract

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,

The quality of life of children with neurodevelopmental disorders and their parents during the Coronavirus disease 19 emergency in Japan

“…A recent online anonymous study on adults showed that the COVID-19 pandemic was negatively associated with mental health (i.e., stress and depression) and QOL [11][12][13] . A higher risk for increased anxiety and depression was seen in younger women (18)(19)(20)(21)(22)(23)(24)(25)(26)(27)(28)(29), unemployed persons, individuals with a prior psychiatric history, and those reporting a greater negative impact on their QOL 11,12 .…”

“…www.nature.com/scientificreports/ The third factor that was related to the QOL of parents was the absence of grandparents, who can play an important role in helping parents with NDD children. One study showed how grandparents who had autistic grandchildren helped the parents understand autistic symptoms 19 . Unfortunately, we cannot comment on whether grandparent support deteriorated or not during the COVID-19 emergency, although we did reveal the presence of a certain proportion of grandparent support during the COVID-19 emergency.…”

c4c: Paediatric pharmacovigilance: Methodological considerations in research and development of medicines for children – A c4c expert group white paper

“…76 Social and cultural differences of what is acceptable in terms of intervention and different concepts of health and disease should be considered during the study design. 77 , 78 , 79 …”

“…76 Social and cultural differences of what is acceptable in terms of intervention and different concepts of health and disease should be considered during the study design. [77][78][79] The collection of safety data in a paediatric study is, on one side, informed by the paediatric safety specification (e.g., identified…”

The Impact of Autism Spectrum Disorder on Parents in Arab Countries: A Systematic Literature Review

“…The literature also suggests that cultural background is an important variable to consider when analyzing the impact of ASD on parents (Ilias et al, 2018 ; Zakirova-Engstrand et al, 2020 ). Parents' awareness and beliefs about the etiology and prognosis of ASD can affect parental responses, coping strategies, as well as treatment decision-making (Hebert and Koulouglioti, 2010 ; Zuckerman et al, 2016 ; Brewton et al, 2021 ).…”