The abstract:
In order to connect with families and influence treatment trajectories, outreach materials should address cultural perceptions of the condition, its causes, and postdiagnostic care. This paper describes the cultural adaptation and translation of the Autism Speaks First 100 Days Kit into Korean for the purpose of improving autism spectrum disorder (ASD) diagnosis, assessment, and interventions. The goal of this study is to describe a methodology for future cross-cultural adaptations and translations of outreach materials on ASD, using the Autism Speaks First 100 Days Kit as an exemplar. The research involved two stages of qualitative interviews: unstructured individual and group interviews with 19 Korean child health and education professionals in Queens, NY, followed by structured cultural consensus modeling interviews with 23 Korean mothers, with and without children with ASD, in Queens, NY and the greater Washington, DC area. We conclude that a systematic approach to cultural translation of outreach materials is feasible. Cultural consensus modeling yielded information about numerous barriers to care, had a demonstrable effect on the translation of the kit, and was efficient when employed with coherent segments of a relatively homogeneous population and focused on a single condition.From the discussion:
Stigma—a negative evaluation of the child—was a sub-text throughout the research, because interviewees stigmatized people with ASD, or the parents of someone with ASD. One woman, when asked to provide a list of words or ideas that came to mind when she thought about children with developmental problems, said, “I feel sad because there is no bond between the child and the mother and father.” In addition to “lack of a bond between parents and child” (coded here under the category of poor childrearing), the additional terms she included in her cards were “stubborn,” “egotistical,” “disobedient,” and “unstable.” Stigma was also related to the whether a developmental problem or functional impairment is a medical or non-medical problem, with the latter being more highly stigmatized. Deafness, for example might cause only mild shame, while autism would suggest that, in the words of one mother, “the child’s needs are not being fulfilled.”
