Women's knowledge, attitudes, and beliefs about Down syndrome: A qualitative research study

American Journal of Medical Genetics, Part A

Volumn 158 A, Issue 6, 2012, Pages 1355-1362

  Levis, Denise M ^a   Harris, Shelly ^b   Whitehead, Nedra ^b   Moultrie, Rebecca ^b   Duwe, Kara ^a   Rasmussen, Sonja A ^a  

^a NATIONAL CENTER ON BIRTH DEFECTS AND DEVELOPMENTAL DISABILITIES   (United States)

^b RTI INTERNATIONAL   (United States)

Author keywords

Attitudes; Beliefs; Down syndrome; Educational materials; Focus groups; Knowledge; Qualitative research

Indexed keywords

ADULT; AFRICAN AMERICAN; ARTICLE; ATTITUDE TO ILLNESS; CAUCASIAN; CHROMOSOME DISORDER; COGNITIVE DEVELOPMENT; DOWN SYNDROME; EDUCATIONAL STATUS; ETHNICITY; FACIES; FEMALE; HEALTH BELIEF; HEALTH EDUCATION; HIGH RISK PREGNANCY; HISPANIC; HUMAN; INTERNET; LIFE EXPECTANCY; MATERNAL AGE; MEDICAL INFORMATION; PREGNANT WOMAN; PRIORITY JOURNAL; QUALITATIVE RESEARCH; QUALITY OF LIFE; QUESTIONNAIRE; RACE DIFFERENCE; RISK ASSESSMENT; RISK FACTOR; SPECIAL EDUCATION;

ADOLESCENT; ADULT; DISTRICT OF COLUMBIA; DOWN SYNDROME; FEMALE; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HUMANS; NORTH CAROLINA; QUALITATIVE RESEARCH; QUALITY OF LIFE; QUESTIONNAIRES; YOUNG ADULT;

EID: 84861226171     PISSN: 15524825     EISSN: 15524833     Source Type: Journal    
DOI: 10.1002/ajmg.a.35340     Document Type: Article

References (30)

1. ACOG Committee on Practice Bulletins. 2007a. ACOG practice bulletin no. 77: Screening for fetal chromosomal abnormalities. Obstet Gynecol 109: 217- 227.
2. ACOG Committee on Practice Bulletins. 2007b. ACOG practice bulletin no. 88: Invasive prenatal testing for aneuploidy. Obstet Gynecol 110: 1459- 1467.
3. Antonak R, Livneh H. 2000. Measurement of attitudes towards persons with disabilities. Disabil Rehabil 22: 211- 224.
4. Atkin CK, Freimuth VS. 2001. Formative evaluation research in campaign design. In: Rice RE, Atkin CK, editors. Public communication campaigns, 3rd edition. Thousand Oaks: Sage. pp 125- 145.
5. Bryant LD, Green JM, Hewison J. 2006. Understandings of Down's syndrome: A Q methodological investigation. Soc Sci Med 63: 1188- 1200.
6. Charon R, Montello M, editors. 2002. Stories matter: The role of narrative in medical ethics. London: Routledge. 254 pp.
7. Chilaka VN, Konje JC, Stewart CR, Narayan H, Taylor DJ. 2001. Knowledge of Down syndrome in pregnant women from different ethnic groups. Prenat Diagn 2: 159- 164.
8. Chiu RW, Akolekar R, Zheng YW, Leung TY, Sun H, Chan KC, Lun FM, Go AT, Lau ET, To WW, Leung WC, Tang RY, Au-Yeung SK, Lam H, Kung YY, Zhang X, van Vugt JM, Minekawa R, Tang MH, Wang J, Oudejans CB, Lau TK, Nicolaides KH, Lo YM. 2011. Non-invasive prenatal assessment of trisomy 21 by multiplexed maternal plasma DNA sequencing: Large scale validity study. BMJ 342: c7401.
9. Ehrich M, Deciu C, Zwiefelhofer T, Tynan JA, Cagasan L, Tim R, Lu V, McCullough R, McCarthy E, Nygren AO, Dean J, Tang L, Hutchison D, Lu T, Wang H, Angkachatchai V, Oeth P, Cantor CR, Bombard A, van den Boom D. 2011. Noninvasive detection of fetal trisomy 21 by sequencing of DNA in maternal blood: A study in a clinical setting. Am J Obstet Gynecol 204: 205.e1- 205.e11.
10. Genetic Counseling Program at the University of South Carolina. 2009. Toward concurrence: Understanding prenatal screening and diagnosis of Down syndrome from the health professional and advocacy community perspectives.
11. Gilmore L, Campbell J, Cuskelly M. 2003. Developmental expectations, personality stereotypes, and attitudes towards inclusive education: Community and teacher views of Down syndrome. Int J Disabil Dev Educ 50: 65- 76.
12. Houts PS, Doak CC, Doak LG, Loscalzo MJ. 2006. The role of pictures in improving health communication: A review of research on attention, comprehension, recall, and adherence. Patient Educ Couns 61: 173- 190.
13. Kleinman A. 1988. The illness narratives: Suffering, healing, and the human condition. New York: Basic Books.
14. Korenromp MJ, Page-Christiaens GC, van den Bout J, Mulder EJ, Visser GH. 2007. Maternal decision to terminate pregnancy in case of Down syndrome. Am J Obstet Gynecol 196: 149.e1- 149.e11.
15. Kreuter MW, Holt CL. 2001. How do people process health information? Applications in an age of individualized communication. Curr Dir Psychol Sci 10: 206- 209.
16. Krueger RA, Casey MA. 2009. Focus groups. A practical guide for applied research, 4th edition. Thousand Oaks: Sage. 220 pp.
17. Moyer A, Brown B, Gates E, Daniels M, Brown HD, Kuppermann M. 1999. Decisions about prenatal testing for chromosomal disorders: Perceptions of a diverse group of pregnant women. J Womens Health Gend Based Med 8: 521- 531.
18. Pace JE, Shin M, Rasmussen SA. 2010. Understanding attitudes towards people with Down syndrome. Am J Med Genet Part A 152A: 2185- 2192.
19. Palomaki GE, Kloza EM, Lambert-Messerlian GM, Haddow JE, Neveux LM, Ehrich M, van den Boom D, Bombard AT, Deciu C, Grody WW, Nelson SF, Canick JA. 2011. DNA sequencing of maternal plasma to detect Down syndrome: An international clinical validation study. Genet Med 13: 913- 920.
20. Papageorgiou EA, Karagrigoriou A, Tsaliki E, Velissariou V, Carter NP, Patsalis PC. 2011. Fetal-specific DNA methylation ratio permits noninvasive prenatal diagnosis of trisomy 21. Nat Med 17: 510- 513.
21. Parker SE, Mai CT, Canfield MA, Rickard R, Wang Y, Meyer RE, Anderson P, Mason CA, Collins JS, Kirby RS, Correa A. 2010. Updated national birth prevalence estimates for selected birth defects in the United States 2004-2006. Birth Defects Res A Clin Mol Teratol 88: 1008- 1016.
22. Pew Research Center. 2011. Health topics: 80% of internet users look for health information online. Pew Internet & American Life Online Report.
23. Rasmussen SA, Whitehead N, Collier SA, Frias JL. 2008. Setting a public health research agenda for Down syndrome: Summary of a meeting sponsored by the Centers for Disease Control and Prevention and the National Down Syndrome Society. Am J Med Genet Part A 146A: 2998- 3010.
24. Sheets KB, Best RG, Brasington CK, Will MC. 2011. Balanced information about Down syndrome: What is essential? Am J Med Genet Part A 155A: 1246- 1257.
25. Skotko BG. 2005. Prenatally diagnosed Down syndrome: Mothers who continued their pregnancies evaluate their health care providers. Am J Obstet Gynecol 192: 670- 677.
26. Skotko BG, Levine SP. 2006. What the other children are thinking: Brothers and sisters of persons with Down syndrome. Am J Med Genet Part C 142C: 180- 186.
27. Skotko BG, Kishnani PS, Capone GT. The Down Syndrome Diagnosis Study Group. 2009. Prenatal diagnosis of Down syndrome: How best to deliver the news. Am J Med Genet Part A 149A: 2361- 2367.
28. Skotko BG, Levine SP, Goldstein R. 2011. Having a brother or sister with Down syndrome: Perspectives from siblings. Am J Med Genet Part A 155A: 2348- 2359.
29. Urbano RC, Hodapp RM. 2007. Divorce in families of children with Down syndrome: A population-based study. Am J Ment Retard 112: 261- 274.
30. Wishart J. 2005. Learning in young children with Down syndrome: public perceptions, empirical evidence. In: Cuskelly M, Jobling A, Buckley S, editors. Down syndrome across the life span. New York: Wiley. pp 18- 27.