"Communities" in Community Engagement: Lessons Learned From Autism Research in South Korea and South Africa

Autism Research

Volumn 5, Issue 3, 2012, Pages 201-210

  Grinker, Roy Richard ^a   Chambers, Nola ^d   Njongwe, Nono ^d   Lagman, Adrienne E ^a   Guthrie, Whitney ^c   Stronach, Sheri ^c   Richard, Bonnie O ^b   Kauchali, Shuaib ^d   Killian, Beverley ^d   Chhagan, Meera ^d   Yucel, Fikri ^e   Kudumu, Mwenda ^e   Barker Cummings, Christie ^e   Grether, Judith ^f   Wetherby, Amy M ^c  

^a GEORGE WASHINGTON UNIVERSITY   (United States)

^b UNIVERSITY OF CALIFORNIA   (United States)

^c FLORIDA STATE UNIVERSITY COLLEGE OF MEDICINE   (United States)

^d UNIVERSITY OF KWAZULU NATAL   (South Africa)

^e SOCIAL AND SCIENTIFIC SYSTEMS INC   (United States)

^f Sequoia Foundation   (United States)

Author keywords

Autism spectrum disorder; Community engagement; Cross cultural studies; Epidemiology; Korea; South Africa

Indexed keywords

AUTISM; CLINICAL EVALUATION; CLINICAL PRACTICE; CLINICAL PROTOCOL; CLINICAL RESEARCH; COGNITION; COMMUNITY; COMMUNITY CARE; COMMUNITY DYNAMICS; DEVELOPMENTAL DISORDER; DIAGNOSTIC AND STATISTICAL MANUAL OF MENTAL DISORDERS; DIAGNOSTIC PROCEDURE; EDUCATIONAL STATUS; EPIDEMIOLOGICAL DATA; ETHNOGRAPHY; HEALTH SERVICE; HUMAN; KNOWLEDGE; MEDICAL RECORD; MULTICENTER STUDY (TOPIC); NOTE; PREVALENCE; PRIORITY JOURNAL; SCREENING TEST; SOUTH AFRICA; SOUTH KOREA; TRADITIONAL HEALER;

ADOLESCENT; CHILD; CHILD BEHAVIOR DISORDERS; CHILD DEVELOPMENT DISORDERS, PERVASIVE; CHILD, PRESCHOOL; CROSS-CULTURAL COMPARISON; CROSS-SECTIONAL STUDIES; DELAYED DIAGNOSIS; DEVELOPING COUNTRIES; EDUCATION, SPECIAL; FORECASTING; HEALTH SERVICES ACCESSIBILITY; HEALTH SERVICES NEEDS AND DEMAND; HUMANS; INFANT; REPUBLIC OF KOREA; RESEARCH; RESIDENCE CHARACTERISTICS; SOCIAL STIGMA; SOUTH AFRICA;

EID: 84862172433     PISSN: 19393792     EISSN: 19393806     Source Type: Journal    
DOI: 10.1002/aur.1229     Document Type: Note

References (51)

1. Alegría, M., Chatterji, P., Wells, K., Cao, Z., Chen, C.N., etal. (2008). Disparity in depression treatment among racial and ethnic minority populations in the United States. Psychiatry Services, 59, 1264-1272.
2. American Psychiatric Association. (2011). Diagnostic and Statistical Manual of Mental Disorders (proposed 5th ed.). Retrieved April 1, 2011, from
3. Aroian, K.J., Katz, A., & Kulwicki, A. (2006). Recruiting and retaining Arab Muslim mothers and children for research. Journal of Nursing Scholarship, 38, 255-261.
4. Autism and Developmental Disabilities Monitoring Network (ADDM). (2012). Prevalence of autism spectrum disorders-Autism and Developmental Disabilities Monitoring Network, 14 sites, United States, 2008. Morbidity and Mortality Weekly Report, 61, 1-19.
5. Blacher, J., & McIntyre, L.L. (2006). Syndrome specificity and behavioural disorders in young adults with intellectual disability: Cultural differences in family impact. Journal of Intellectual Disability Research, 50, 184-198.
6. Burhansstipanov, L., Christopher, S., & Schumacher, A. (2005). Lessons learned from community-based participatory research in Indian Country. Cancer Control, 12, 70-76.
7. Chung, J.Y., & Grinker, R.R. (1992). AIDS and the child. Current Opinion in Psychiatry, 5, 503-508.
8. Clark, N., Lachance, L., Doctor, L.J., Gilmore, L., Kelly, C., etal. (2010). Policy and system change and community coalitions: Outcomes from allies against asthma. American Journal of Public Health, 100, 904-912.
9. Durkin, M. (2002). The epidemiology of developmental disabilities in low-income countries. Mental Retardation and Developmental Disabilities Research Reviews, 8, 206-211.
10. Dyches, T.T., Wilder, L.K., Sudweeks, R.R., Obiakor, F.E., & Algozzine, B. (2004). Multiculture issues in autism. Journal of Autism and Developmental Disorders, 34, 211-222.
11. Eisenhower, A., & Blacher, J. (2006). Mothers of young adults with intellectual disability: Multiple roles, ethnicity and well-being. Journal of Intellectual Disability Research, 50, 905-916.
12. Ejiogu, N., Norbeck, J.H., Mason, M.A., Cromwell, B.C., Zonderman, A.B., & Evans, M.K. (2011). Recruitment and retention strategies for minority or poor clinical research participants: Lessons from the healthy aging in neighborhoods of diversity across the life span study. The Gerontologist, 51, S33-S45.
13. Escobedo, C., Guerrero, J., Lujan, G., Ramirez, A., & Serrano, D. (2007). Ethical issues with informed consent. Bio-Ethics, 1, 1-8.
14. Ferguson, J. (1990). The anti-politics machine: "Development, " depoliticization and bureaucratic power in Lesotho. Cambridge: Cambridge University Press.
15. Frankish, C.J., George, A., Caniel, M., Doyle Waters, M., & Walker, M. (1997). Participatory health promotion research in Canada: A community guidebook. Ottawa: Royal Society of Canada.
16. Fuqua, S.R., Wyatt, S.B., Andrew, M.E., Sarpong, D.F., Henderson, F.R., etal. (2005). Recruiting African-American research participation in the Jackson Heart Study: Methods, response rates, and sample description. Ethnicity and Disease, 15 (Suppl. 6), S6-18-S6-29.
17. Gonzalez, H.M., Vega, W.A., Williams, D.R., Tarraf, W., West, B.T., & Neighbors, H.W. (2010). Depression care in the United States: Too little for too few. Archives of General Psychiatry, 67, 37-46.
18. Grinker, R.R. (2007). Unstrange minds: Remapping the world of autism. New York: Basic Books.
19. Grinker, R.R., Yeargin-Allsopp, M., & Boyle, C. (2011). Culture and autism spectrum disorders: The impact on prevalence and recognition. In D. Amaral, G. Dawson, & D. Geschwind (Eds.), Autism spectrum disorders (pp. 112-136). Oxford: Oxford University Press.
20. Harachi, T.W., Catalano, R.F., & Hawkins, J.D. (1997). Effective recruitment for parenting programs with ethnic minority communities. Child and Adolescent Social Work Journal, 14, 23-39.
21. Horowitz, C.R., Arniella, A., James, S., & Bickell, N.A. (2004). Using community-based participatory research to reduce health disparities in East and Central Harlem. Mount Sinai Journal of Medicine, 71, 368-374.
22. Horowitz, C.R., Robinson, M., & Seifer, S. (2009). Community-based participatory research from the margin to the mainstream: Are researchers prepared? Circulation, 119, 2633-2642.
23. Hurst, S., & Nader, P. (2006). Building community involvement in cross-cultural indigenous health programs. International Journal for Quality in Health Care, 18, 294-298.
24. Israel, B.A., Checkoway, B., Schulz, A., & Zimmerman, M. (1994). Health education and community empowerment: Conceptualizing and measuring perceptions of individual, organizational, and community control. Health Education Quarterly, 21, 149-170.
25. Israel, B.A., Parker, E.A., Rowe, Z., Salvatore, A., Minkler, M., etal. (2005). Community-based participatory research: Lessons learned from the Centers for Children's Environmental Health and Disease Prevention Research. Environmental Health Perspectives, 113, 1463-1471.
26. Jarmon, J. (2011). Neighborhood-the smallest unit of health: A health center model for Pacific Islander and Asian health. Poverty and Race, 20, 13-16.
27. Kaufert, J.M., & Kaufert, P.L. (1998). Ethical issues in community health research: Implications for first nations and circumpolar indigenous peoples. Circumpolar Health, 96, 33-37.
28. Kim, Y.S., Leventhal, B.L., Koh, Y., Fombonne, E., Laska, E., etal. (2011). Prevalence of autism spectrum disorder in a total population sample. American Journal of Psychiatry, 168, 904-912.
29. Kleinman, A., Eisenberg, L., & Good, B. (1978). Culture, illness, and care: Clinical lessons from anthropologic and cross-cultural research. Annals of Internal Medicine, 88, 251-258.
30. Korean Ministry of Education, Science, and Technology/Korean Educational Development. (2010). Statistical Yearbook of Education. Seoul, Korea.
31. Leung, M.W., Yen, I.H., & Minkler, M. (2003). Community-based participatory research: A promising approach for increasing epidemiology's relevance in the 21st century. International Journal of Epidemiology, 33, 499-506.
32. Levy, S., & Hyman, S. (2005). Novel treatments for autistic spectrum disorders. Mental Retardation and Developmental Disabilities Research Reviews, 11, 131-142.
33. Lord, C., Rutter, M., DiLavore, P.C., & Risi, S. (2002). Autism diagnostic observation schedule. Los Angeles, CA: Western Psychological Services.
34. Lord, C., Rutter, M., & Le Couteur, A. (1994). Autism diagnostic interview-revised: A revised version of a diagnostic interview for caregivers of individuals with possible pervasive developmental disorders. Journal of Autism and Developmental Disorders, 24, 659-685.
35. MacQueen, K.M., McLellan, E., Metzger, D.S., Kegeles, S., Strauss, R.P., etal. (2001). What is community? An evidence-based definition for participatory public health. American Journal of Public Health, 91, 1929-1938.
36. Mandell, D.S., Listerud, J., Levy, S.E., & Pinto-Martin, J.A. (2002). Race differences in the age at diagnosis among Medicaid-eligible children with autism. Journal of the American Academy of Child & Adolescent Psychiatry, 41, 1447-1453.
37. Mandell, D.S., Novak, M., & Zubritsky, C. (2005). Factors associated with age of diagnosis among children with autism spectrum disorders. Pediatrics, 116, 1480-1486.
38. Mandell, D., Wiggins, L., Carpenter, L., Daniels, J., DiGuiseppi, C., etal. (2009). Racial/ethnic disparities in the identification of children with autism spectrum disorders. American Journal of Public Health, 99, 493-498.
39. Marshall, P.A. (2007). Ethical challenges in study design and informed consent for health research in resource-poor settings. WHO Special Topics in Social, Economic and Behavioural (SEB) Research Report Series; No. 5, TDR/SDR/SEB/ST/07.1.
40. Maulik, P.K., & Darmstadt, G.L. (2007). Childhood disability in low and middle-income countries: Overview of screening, prevention, services, legislation, and epidemiology. Pediatrics, 120, s1-s55.
41. Minkler, M., & Wallerstein, N. (Eds.). (2003). Community based participatory research in health. San Francisco, CA: Jossey-Bass.
42. Mosavel, M., Simon, C., van Stade, D., & Buchbinder, M. (2005). Community-based participatory research (CBPR) in South Africa: Engaging multiple constituents to shape the research question. Social Science & Medicine, 61, 2577-2587.
43. Myers, H.F., Alvy, K.T., Richardson, M., Arrington, A., Marigna, M., etal. (1990). The effective black parenting program: A controlled research study with inner-city black families. Studio City, CA: Center for the Improvement of Child Caring.
44. Njoku, M.G., Jason, L.A., & Torres-Harding, S.R. (2005). The relationships among coping styles and fatigue in an ethnically diverse sample. Ethnicity and Health, 10, 263-278.
45. Perry, A.R. (2011). Man up: Integrating fatherhood and community engagement. Journal of Community Engagement and Scholarship, 4, 15-24.
46. Pinto, R.M., McKay, M.M., & Escobar, C. (2008). "You've gotta know the community": Minority women make recommendations about community-focused health research. Women and Health, 47, 83-104.
47. Skinner, D., Rodriguez, P., & Bailey, D.B. (1999). Qualitative analysis of Latino parents' religious interpretations of their child's disability. Journal of Early Intervention, 22, 271-285.
48. Wetherby, A., & Prizant, B. (2002). Communication and symbolic behavior scales developmental profile-first normed edition. Baltimore, MD: Paul H. Brookes.
49. Wetherby, A., Woods, J., & Lord, C. (2007). ESAC: Early screening for autism and communication disorders unpublished manual. Tallahassee, FL: Florida State University.
50. World Health Organization. (2006). Neurological disorders: Public health challenges. Geneva: WHO Press.
51. Wyatt, S.B., Diekelmann, N., Henderson, F., Andrew, M., Billingsley, G., etal. (2003). A Community-driven model of research participation: The Jackson heart study participant recruitment and retention study. Ethnicity and Disease, 13, 438-455.