Parent/caregiver perspectives of functioning in autism spectrum disorders: A comparative study in Sweden and South Africa.
The ICF Core Sets give a reliable picture of daily-life barriers for autism families in both wealthy and low-resource countries, but you still need to check for local stressors like stigma or racism.
01Research in Context
What this study did
Viljoen et al. (2019) asked moms, dads, and other caregivers in Sweden and South Africa the same set of questions.
They used the ICF Core Sets checklist to see what daily-life barriers families of children with autism face.
The team compared answers from the two countries to learn if the tool works the same way across cultures.
What they found
Caregivers in both places listed almost the same problems: trouble with communication, play, and getting services.
The small differences they saw did not follow a rich-country versus poor-country pattern.
Parents said the ICF checklist captured their real-life challenges, so it appears culturally fair.
How this fits with other research
Montenegro et al. (2022) later asked Latin-American caregivers the same kind of questions and found the opposite: more service barriers predicted higher felt stigma.
The two studies seem to clash, but Cecilia measured stigma while Marisa only asked about functioning profiles, so both can be true.
Williams et al. (2019) compared African-American and Euro-American caregivers inside the United States and saw big stress differences, showing that culture still matters even within one country.
Onovbiona et al. (2024) added that Black U.S. families feel racial and logistical barriers lower their treatment quality, a nuance Marisa’s broader country lens did not capture.
Why it matters
You can use the short ICF Core Sets interview with any family and trust the answers; culture does not skew the results.
Still, after you map functioning, ask follow-up questions about local stigma, racism, and service access, because those pieces vary by place and affect how caregivers feel.
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02At a glance
03Original abstract
Functional outcomes in autism spectrum disorder can be highly variable given the heterogeneous nature of autism spectrum disorder and its interaction with environmental factors. We set out to compare parent/caregiver perceptions of functioning in two divergent countries that participated in the International Classification of Functioning Disability and Health (ICF) Core Set for Autism Spectrum Disorder development study. We focused on the frequency and content of items reported, and hypothesized that environmental factors would most frequently be reported as barriers to functioning in low-resource settings. Using frequency and qualitative content analysis, we compared data from South Africa (n = 22) and Sweden (n = 13). Frequency agreement was seen in three activities and participation categories, and one environmental factor. Obvious frequency differences were observed in one environmental factors category, six body functions categories and three activities and participation categories. Only three ICF categories (immediate family, attention functions, products and technology for personal use) differed in content. Contrary to our hypotheses, few differences in perspectives about environmental factors emerged. The universality of our findings supports the global usefulness of the recently developed ICF Core Sets for Autism Spectrum Disorder. We recommend that more comparative studies on autism spectrum disorder and functioning should be conducted, and that similar comparisons in other disorders where Core Sets have been developed may be valuable.
Autism : the international journal of research and practice, 2019 · doi:10.1177/1362361319829868