Decision Making Following a Prenatal Diagnosis of Down Syndrome: An Integrative Review

Journal of Midwifery and Women's Health

Volumn 57, Issue 2, 2012, Pages 156-164

  Choi, Hyunkyung ^a   van Riper, Marcia ^a,b   Thoyre, Suzanne ^a  

^a UNIVERSITY OF NORTH CAROLINA   (United States)

^b Carolina Center for Genome Sciences   (United States)

Author keywords

Decision making; Down syndrome; Prenatal diagnosis

Indexed keywords

ATTITUDE TO DISABILITY; CHILD PARENT RELATION; DEMOGRAPHY; DOWN SYNDROME; GESTATIONAL AGE; HUMAN; INDUCED ABORTION; MATERNAL AGE; MEDICAL HISTORY; PATIENT DECISION MAKING; POPULATION RESEARCH; PREGNANCY TERMINATION; PREGNANT WOMAN; PRENATAL DIAGNOSIS; PRIORITY JOURNAL; QUALITY OF LIFE; RELIGION; REVIEW; REWARD; SIBLING; SOCIAL PSYCHOLOGY; SUPPORT GROUP;

ABORTION, INDUCED; DECISION MAKING; DOWN SYNDROME; FEMALE; HUMANS; PREGNANCY; PRENATAL DIAGNOSIS;

EID: 84858774221     PISSN: 15269523     EISSN: 15422011     Source Type: Journal    
DOI: 10.1111/j.1542-2011.2011.00109.x     Document Type: Review

References (43)

1. Cohen WI. Medical care of the child with Down syndrome. In: Jackson AP, Vessey JA, eds. Primary Care of the Child with a Chronic Condition. St. Louis, Mo Mosby;2004:223-245.
2. ACOG Committee on Practice Bulletins. ACOG practice bulletin: clinical management guidelines for obstetrician-gynecologists: invasive prenatal testing for aneuploidy. Obstet Gynecol. 2007;110(6):1459-1467.
3. Skotko B. With new prenatal testing, will babies with Down syndrome slowly disappear? Arch Dis Child. 2009;94(11):823-826.
4. Zindler L. Ethical decision making in first trimester pregnancy screening. J Perinat Neonatal Nurs. 2005;19(2):122-131.
5. Reid B, Sinclair M, Barr O, Dobbs F, Crealey G. A meta-synthesis of pregnant women's decision-making processes with regard to antenatal screening for Down syndrome. Soc Sci Med. 2009;69(11):1561-1573.
6. Park A, Mathews M. Women's decisions about maternal serum screening testing: a qualitative study exploring what they learn and the role prenatal care providers play. Women Birth. 2009;22(2):73-78.
7. Etchegary H, Potter B, Howley H, et al. The influence of experiential knowledge on prenatal screening and testing decisions. Genet test. 2008;12(1):115-124.
8. García E, Timmermans D, van Leeuwen E. The impact of ethical beliefs on decisions about prenatal screening tests: searching for justification. Soc Sci Med. 2008;66(3):753-764.
9. van den Berg M, Timmermans D, Kleinveld J, et al. Are counsellors' attitudes influencing pregnant women's attitudes and decisions on prenatal screening? Prenat Diagn. 2007;27(6):518-524.
10. Seror V, Ville Y. Prenatal screening for Down syndrome: women's involvement in decision-making and their attitudes to screening. Prenat Diagn. 2009;29(2):120-128.
11. Hwa H, Huang L, Hsieh F, Chow S. Informed consent for antenatal serum screening for Down syndrome. Taiwan J Obstet Gynecol. 2010;49(1):50-56.
12. Brajenovic-Milic B, Babic I, Ristic S, Vranekovic J, Brumini G, Kapovic M. Pregnant women's attitudes toward amniocentesis before receiving Down syndrome screening results. Womens Health Issues. 18(2):79-84.
13. Pruksanusak N, Suwanrath C, Kor-anantakul O, et al. A survey of the knowledge and attitudes of pregnant Thai women towards Down syndrome screening. J Obstet Gynaecol Res. 2009;35(5):876-881.
14. van den Heuvel A, Chitty L, Dormandy E, et al. Is informed choice in prenatal testing universally valued? a population-based survey in Europe and Asia. BJOG. 2009;116(7):880-885.
15. Mansfield C, Hopfer S, Marteau T. Termination rates after prenatal diagnosis of Down syndrome, spina bifida, anencephaly, and Turner and Klinefelter syndromes: a systematic literature review. Prenat Diagn. 1999;19(9):808-812.
16. Zeanah C, Dailey J, Rosenblatt M, Saller Jr D. Do women grieve after terminating pregnancies because of fetal anomalies? a controlled investigation. Obstet Gynecol. 1993;82(2):270-275.
17. Davies V, Gledhill J, McFadyen A, Whitlow B, Economides D. Psychological outcome in women undergoing termination of pregnancy for ultrasound detected fetal anomaly in the first and second trimesters: a pilot study. Ultrasound Obstet Gynecol. 2005;25(4):389-392.
18. Korenromp MJ, Page-Christiaens GCML, van den Bout J, et al. A prospective study on parental coping 4 months after termination of pregnancy for fetal anomalies. Prenat Diagn. 2007;27(8):709-716.
19. Korenromp MJ, Page-Christiaens GCML, van den Bout J, Mulder EJH, Visser GHA. Adjustment to termination of pregnancy for fetal anomaly: a longitudinal study in women at 4, 8, and 16 months. Am J Obstet Gynecol. 2009;201(2):160.e161-160.e167.
20. Mourik M, Connor J, Ferguson Smith M. The psychosocial sequelae of a second trimester termination of pregnancy for fetal abnormality. Prenat Diagn. 1992;12(3):189-204.
21. Kersting A, Dorsch M, Kreulich C, et al. Trauma and grief 2-7 years after termination of pregnancy because of fetal anomalies-a pilot study. J Psychosom Obstet Gynecol. 2005;26(1):9-14.
22. Korenromp M, Christiaens G, van den Bout J, et al. Long-term psychological consequences of pregnancy termination for fetal abnormality: a cross-sectional study. Prenat Diagn. 2005;25(3):253-260.
23. Boyd PA, DeVigan C, Khoshnood B, et al. Survey of prenatal screening policies in Europe for structural malformations and chromosome anomalies, and their impact on detection and termination rates for neural tube defects and Down's syndrome. BJOG. 2008;115(6):689-696.
24. Whittemore R, Knafl K. The integrative review: updated methodology. J Adv Nurs. 2005;52(5):546-553.
25. Bell M, Stoneman Z. Reactions to prenatal testing: reflection of religiosity and attitudes toward abortion and people with disabilities. J Inform. 2000;105(1):1-13.
26. Bryant L, Hewison JD, Green JM. Attitudes towards prenatal diagnosis and termination in women who have a sibling with Down's syndrome. J Reprod Infant Psychol. 2005;23(2):181-198.
27. Lawson K. Expectations of the parenting experience and willingness to consider selective termination for Down syndrome. J Reprod Infant Psychol. 2006;24(1):43-59.
28. Lawson KL, Walls-Ingram SA. Selective abortion for Down syndrome: the relation between the quality of intergroup contact, parenting expectations, and willingness to terminate. J Appl Soc Psychol. 2010;40(3):554-578.
29. Bryant LD, Green JM, Hewison J. The role of attitudes towards the targets of behaviour in predicting and informing prenatal testing choices. Psychol Health. 2009;25(10):1175-1194.
30. Leung TN, Ching Chau MM, Chang JJ, Leung TY, Fung TY, Lau TK. Attitudes towards termination of pregnancy among Hong Kong Chinese women attending prenatal diagnosis counselling clinic. Prenat Diagn. 2004;24(7):546-551.
31. Roberts CD, Stough LM, Parrish LH. The role of genetic counseling in the elective termination of pregnancies involving fetuses with disabilities. J Spec Educ. 2002;36(1):48-55.
32. Britt DW, Risinger ST, Miller V, Mans MK, Krivchenia EL, Evans MI. Determinants of parental decisions after the prenatal diagnosis of Down syndrome: bringing in context. Am J Med Genet. 2000;93(5):410-416.
33. Korenromp MJ, Page-Christiaens GCML, van den Bout J, Mulder EJH, Visser GHA. Maternal decision to terminate pregnancy in case of Down syndrome. Am J Obstet Gynecol. 2007;196(2):149.e1-149.e11.
34. Quadrelli R, Quadrelli A, Mechoso B, Laufer M, Jaumandreu C, Vaglio A. Parental decisions to abort or continue a pregnancy following prenatal diagnosis of chromosomal abnormalities in a setting where termination of pregnancy is not legally available. Prenat Diagn. 2007;27(3):228-232.
35. Zlotogora J. Parental decisions to abort or continue a pregnancy with an abnormal finding after an invasive prenatal test. Prenat Diagn. 2002;22(12):1102-1106.
36. van den Heuvel A, Marteau T. Cultural variation in values attached to informed choice in the context of prenatal diagnosis. Semin Fetal Neonatal Med. 2008;13(2):99-102.
37. Hall S, Chitty L, Dormandy E, et al. Undergoing prenatal screening for Down's syndrome: presentation of choice and information in Europe and Asia. Eur J Hum Genet. 2007;15(5):563-569.
38. Su B, Macer D. Chinese people's attitudes towards genetic disease and children with handicap. Law Hum Genome Rev. 2003;18:191-210.
39. Henwood S, Dixon J. Employing adults with Down syndrome. Down Synd News Update. 2002;2(2):68-69.
40. Hodapp RM, Ly TM, Fidler DJ, Ricci LA. Less stress, more rewarding: parenting children with Down syndrome. Parent: Sci Pract. 2001;1(4):317-337.
41. Pueschel SM. Adults with Down syndrome. Baltimore, MD Paul H. Brookes; 2006.
42. Elder SH, Laurence KM. The impact of supportive intervention after second trimester termination of pregnancy for fetal abnormality. Prenat Diagn. 1991;11(1):47-54.
43. Kennedy B. The prenatally and postnatally diagnosed conditions awareness act. Disability Rights Education & Defense Fund Web site. Published October 16, 2008. Accessed January 25, 2011.