Cultural Adaptation and Translation of Outreach Materials on Autism Spectrum Disorder
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In order to connect with families and influence treatment trajectories, outreach materials should address cultural perceptions of the condition, its causes, and post-diagnostic 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.
KeywordsAutism spectrum disorder Outreach materials Cultural aspects of ASD Korean-Americans Ethnic disparities Translation
The research was funded by the Autism Speaks Foundation. The authors thank Joyce Chung, Amy Daniels, and Andy Shih for their insights and contributions to the paper, and the overall project. We extend special gratitude to the many parents and professionals we interviewed in New York City and Washington, DC for their time and generosity. All errors and oversights are the responsibility of the authors. Dr. Beidas was supported by the following grants from NIMH while preparing this manuscript (K23 MH099179).
- Borgatti, S. (1999). Elicitation techniques for cultural domain analysis. In J. J. Schensul & M. D. LeCompte (Eds.), Enhanced ethnographic methods: Audiovisual techniques, focused group interviews, and elicitation techniques (pp. 115–151). Lanham: AltaMira Press.Google Scholar
- Canal-Bedia, R., García-Primo, P., Martín-Cilleros, M. V., Bantos-Borbujo, J., Guisuraga-Fernández, Z., Herráez-García, L., et al. (2011). Modified checklist for autism in toddlers: Cross-cultural adaptation and validation in Spain. Journal of Autism and Developmental Disorders, 41(10), 1342–1351.PubMedCrossRefGoogle Scholar
- Chavez, L. R., Hubbell, F. A., McMullin, J. M., Martinez, R. G., & Mishra, S. I. (1995). Structure and meaning in models of breast and cervical cancer risk factors: A comparison of perceptions among Latinas, Anglo women, and physicians. Medical Anthropology Quarterly, 9(1), 40–74.PubMedCrossRefGoogle Scholar
- Freeth, M., Milne, E., Sheppard, E., & Ramachandran, R. (2013). Autism across cultures: Perspectives from non-western cultures and implications for research. In F. Volkmar, R. Paul, S. Rogers, & K. Pelphrey (Eds.), Handbook of autism and pervasive developmental disorders (Vol. 2, pp. 997–1013). New York: Wiley.Google Scholar
- Grinker, R. R., Yeargin-Allsopp, M., & Boyle, C. (2011). ASD and culture: International trends in prevalence and diagnosis. In D. Amaral, D. Geschwind, & G. Dawson (Eds.), Autism spectrum disorders. Oxford: Oxford University Press.Google Scholar
- Kass, B., Weinick, M., & Monheit, A. (1999). Racial and ethnic differences in health, 1996. Chartbook No. 2. Agency for health care policy and research. http://meps.ahrq.gov/data_files/publications/cb2/cb2.shtml. Accessed 20 Jan 2015.
- Kleinman, A. (1981). Patients and healers in the context of culture: The borderland between anthropology, medicine, and psychiatry. Berkeley: University of California Press.Google Scholar
- Maier, C. (1995). Towards a theoretical practice for cross-cultural translation. In A. Dingwaney & C. Meier (Eds.), Between languages and cultures: Translation and cross-cultural texts (pp. 21–38). Pittsburgh: University of Pittsburgh Press.Google Scholar
- Rutter, M., Le Couteur, A., & Lord, C. (2003). Manual for the ADIWPS version. Los Angeles: Western Psychological Services.Google Scholar
- Schopler, E., Reichler, R. J., & Brenner, B. R. (1988). The childhood autism rating scale (CARS). Los Angeles: Western Psychological Services.Google Scholar
- Smedley, B. D., Stith, A., & Nelson, A. (Eds.). (2002). Unequal treatment: Confronting racial and ethnic disparities in health care. Washington, DC: National Academies Press.Google Scholar
- Spicer, P. (2010). Cultural influences on parenting. Zero to Three, 30(4), 28–32.Google Scholar
- U.S. Census Bureau. (2010). State & County Quickfacts: NY. http://quickfacts.census.gov. Accessed 13 Nov 2013.
- U.S. Department of Health and Human Services. (2001). Culture, race, and ethnicity—a supplement to mental health: A report of the surgeon general. Rockville: Center for Mental Health Services.Google Scholar