Exploring informed choice in the context of prenatal testing: Findings from a qualitative study

Health Expectations

Volumn 11, Issue 4, 2008, Pages 355-365

  Potter, Beth K ^a   O'Reilly, Natasha ^b   Etchegary, Holly ^a   Howley, Heather ^a   Graham, Ian D ^a,c,d   Walker, Mark ^a,d   Coyle, Doug ^a   Chorny, Yelena ^e   Cappelli, Mario ^a,f   Boland, Isabelle ^a   Wilson, Brenda J ^a  

^a UNIVERSITY OF OTTAWA   (Canada)

^b UNIVERSITY OF TORONTO   (Canada)

^c CANADIAN INSTITUTES OF HEALTH RESEARCH   (Canada)

^d OTTAWA HOSPITAL RESEARCH INSTITUTE   (Canada)

^e QUEEN S UNIVERSITY   (Canada)

^f CHILDREN S HOSPITAL OF EASTERN ONTARIO   (Canada)

Author keywords

Informed choice; Prenatal diagnosis; Prenatal screening

Indexed keywords

ADULT; ARTICLE; DECISION MAKING; EXPERIENCE; FEMALE; FETUS MALFORMATION; HEALTH CARE PERSONNEL; HEALTH CARE POLICY; HEALTH PRACTITIONER; HEALTH SERVICE; HUMAN; INFORMATION; INTROSPECTION; KNOWLEDGE; LIFE; MATERNAL CARE; MORALITY; MOTHER; PREGNANCY; PRENATAL SCREENING; PRIORITY JOURNAL; QUALITATIVE RESEARCH; SAMPLE; SCIENTIFIC LITERATURE; SEMI STRUCTURED INTERVIEW; THINKING; UNITED STATES;

ABORTION, EUGENIC; ADULT; CHOICE BEHAVIOR; DIAGNOSTIC TESTS, ROUTINE; FEMALE; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HUMANS; INFORMED CONSENT; MIDDLE AGED; MORALS; ONTARIO; PATIENT ACCEPTANCE OF HEALTH CARE; PREGNANCY; PREGNANCY TRIMESTERS; PREGNANT WOMEN; PRENATAL CARE; PRENATAL DIAGNOSIS; PROFESSIONAL-PATIENT RELATIONS; QUALITATIVE RESEARCH; RISK FACTORS; YOUNG ADULT;

EID: 56849104642     PISSN: 13696513     EISSN: 13697625     Source Type: Journal    
DOI: 10.1111/j.1369-7625.2008.00493.x     Document Type: Article

References (42)

1. O'Connor AM, Legare F, Stacey D. Risk communication in practice: the contribution of decision aids. BMJ, 2003 327 : 736 740.
2. Wennberg JE. Unwarranted variations in healthcare delivery: implications for academic medical centres. BMJ, 2002 325 : 961 964.
3. Wennberg DE, Wennberg JE. Addressing variations: is there hope for the future? Health Affairs (Millwood), 2003 (Suppl Web Exclusives) : W3 W7. Available at: http://content.healthaffairs.org/webexclusives/index.dtl?year= 2003.
4. Marteau TM, Dormandy E, Michie S. A measure of informed choice. Health Expect, 2001 4 : 99 108.
5. Michie S, Dormandy E, Marteau TM. The multi-dimensional measure of informed choice: a validation study. Patient Education and Counselling, 2002 48 : 87 91.
6. O'Connor A, O'Brien-Pallas LL. Decisional conflict. In : Mcfarlane GK, Mcfarlane EA (eds) Nursing Diagnosis and Intervention. Toronto : Mosby, 1989.
7. General Medical Council. Seeking Patients' Consent: the Ethical Considerations. London : GMC, 1999.
8. Jaques AM, Sheffield LJ, Halliday JL. Informed choice in women attending private clinics to undergo first-trimester screening for Down syndrome. Prenatal Diagnosis, 2005 25 : 656 664.
9. Rowe HJ, Fisher JR, Quinlivan JA. Are pregnant Australian women well informed about prenatal genetic screening? A systematic investigation using the multidimensional measure of informed choice. The Australian & New Zealand Journal of Obstetrics & Gynaecology, 2006 46 : 433 439.
10. van den BM, Timmermans DR, Ten Kate LP, van Vugt JM, van der WG. Are pregnant women making informed choices about prenatal screening? Genetics in Medicine, 2005 7 : 332 338.
11. Permaul-Woods JA, Carroll JC, Reid AJ et al. Going the distance: the influence of practice location on the Ontario Maternal Serum Screening Program. CMAJ, 1999 161 : 381 385.
12. Summers AM, Farrell SA, Huang T, Meier C, Wyatt PR. Maternal serum screening in Ontario using the triple marker test. Journal of Medical Screening, 2003 10 : 107 111.
13. CEMAT. Randomised trial to assess safety and fetal outcome of early and midtrimester amniocentesis. The Canadian Early and Mid-trimester Amniocentesis Trial (CEMAT) Group. Lancet, 1998 351 : 242 247.
14. Chodirker BN, Cardrin C, Davies GAL et al. Canadian guidelines for prenatal diagnosis. Techniques of prenatal diagnosis. Journal of Obstetrics and Gynaecology Canada, 2001 23 : 616 624.
15. Green JM, Hewison J, Bekker HL, Bryant LD, Cuckle HS. Psychosocial aspects of genetic screening of pregnant women and newborns: a systematic review. Health Technology Assessment, 2004 8 (33).
16. O'Connor AM. Ottawa Decision Support Framework to Address Decisional Conflict. 2006. Available at: http://www.ohri.ca/decisionaid, accessed on 14 April 2008.
17. Rokeach M. Beliefs, Attitudes and Values. San Francisco : Jossey-Bass, 1968.
18. Giacomini M, Hurley J, Gold I, Smith P, Abelson J. The policy analysis of 'values talk': lessons from Canadian health reform. Health Policy, 2004 67 : 15 24.
19. Rohan MJ. A rose by any name? The values construct. Personality and Social Psychology Review, 2000 4 : 255 277.
20. Carroll JC, Brown JB, Reid AJ, Pugh P. Women's experience of maternal serum screening. Canadian Family Physician, 2000 46 : 614 620.
21. Lumley MA, Zamerowski ST, Jackson L, Dukes K, Sullivan L. Psychosocial correlates of pregnant women's attitudes toward prenatal maternal serum screening and invasive diagnostic testing: beyond traditional risk status. Genetic Testing, 2006 10 : 131 138.
22. Rapp R. Refusing prenatal diagnosis: the meanings of bioscience in a multicultural world. Science, Technology and Human Values, 1998 23 : 45 70.
23. Williams C, Sandall J, Lewando-Hundt G, Heyman B, Spencer K, Grellier R. Women as moral pioneers? Experiences of first trimester antenatal screening. Social Science and Medicine, 2005 61 : 1983 1992.
24. van den BM, Timmermans DR, Ten Kate LP, van Vugt JM, van der WG. Informed decision making in the context of prenatal screening. Patient Education and Counseling, 2006 63 : 110 117.
25. Lippman A. Embodied knowledge and making sense of prenatal diagnosis. Journal of Genetic Counseling, 1999 8 : 255 273.
26. d'Agincourt-Canning L. The effect of experiential knowledge on construction of risk perception in hereditary breast/ovarian cancer. Journal of Genetic Counseling, 2005 14 : 55 69.
27. Root R, Browner CH. Practices of the pregnant self: compliance with and resistance to prenatal norms. Culture, Medicine and Psychiatry, 2001 25 : 195 223.
28. Anderson G. Patient decision-making for clinical genetics. Nursing Inquiry, 2007 14 : 13 22.
29. Bekker HL, Hewison J, Thornton JG. Understanding why decision aids work: linking process with outcome. Patient Education and Counseling, 2003 50 : 323 329.
30. Bekker HL, Hewison J, Thornton JG. Applying decision analysis to facilitate informed decision making about prenatal diagnosis for Down syndrome: a randomised controlled trial. Prenatal Diagnosis, 2004 24 : 265 275.
31. Al Jader LN, Parry-Langdon N, Smith RJ. Survey of attitudes of pregnant women towards Down syndrome screening. Prenatal Diagnosis, 2000 20 : 23 29.
32. Press N, Browner CH. Why women say yes to prenatal diagnosis. Social Science and Medicine, 1997 45 : 979 989.
33. Santalahti P, Hemminki E, Latikka AM, Ryynanen M. Women's decision-making in prenatal screening. Social Science and Medicine, 1998 46 : 1067 1076.
34. Suter SM. The routinization of prenatal testing. American Journal of Law and Medicine, 2002 28 : 233 270.
35. Hunt LM, de Voogd KB, Castaneda H. The routine and the traumatic in prenatal genetic diagnosis: does clinical information inform patient decision-making? Patient Education and Counseling, 2005 56 : 302 312.
36. O'Connor AM, Stacey D, Entwistle V et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev, 2003 CD001431 (doi :).
37. Drake ER, Engler-Todd L, O'Connor A, Surh LC, Hunter A. Development and evaluation of a decision aid about prenatal testing for women of advanced maternal age. Journal of Genetic Counseling, 1999 8 : 217 233.
38. Hunter AG, Cappelli M, Humphreys L et al. A randomized trial comparing alternative approaches to prenatal diagnosis counseling in advanced maternal age patients. Clinical Genetics, 2005 67 : 303 313.
39. Leung KY, Lee CP, Chan HY, Tang MH, Lam YH, Lee A. Randomised trial comparing an interactive multimedia decision aid with a leaflet and a video to give information about prenatal screening for Down syndrome. Prenatal Diagnosis, 2004 24 : 613 618.
40. Nagle C, Lewis S, Meiser B et al. Evaluation of a decision aid for prenatal testing of fetal abnormalities: a cluster randomised trial [ISRCTN22532458]. BMC Public Health, 2006 6 : 96.
41. Dormandy E, Michie S, Hooper R, Marteau TM. Low uptake of prenatal screening for Down syndrome in minority ethnic groups and socially deprived groups: a reflection of women's attitudes or a failure to facilitate informed choices? International Journal of Epidemiology, 2005 34 : 346 352.
42. Fransen MP, Essink-Bot ML, Oenema A, Mackenbach JP, Steegers EA, Wildschut HI. Ethnic differences in determinants of participation and non-participation in prenatal screening for Down syndrome: a theoretical framework. Prenatal Diagnosis 2007 27 : 938 950.