'It made you think twice' - an interview study of women's perception of a web-based decision aid concerning screening and diagnostic testing for fetal anomalies

BMC Pregnancy and Childbirth

Volumn 16, Issue 1, 2016, Pages

  Åhman, Annika ^a   Sarkadi, Anna ^a   Lindgren, Peter ^a   Rubertsson, Christine ^a  

^a UPPSALA UNIVERSITY   (Sweden)

Author keywords

Decision aid; Genetic screening; Informed choice; Internet; Pregnancy ultrasound

Indexed keywords

ADULT; ARTICLE; AWARENESS; CONTROLLED STUDY; DECISION MAKING; FEMALE; FETUS; FETUS ECHOGRAPHY; FETUS MALFORMATION; HUMAN; INTERNET; INTERVIEW; KNOWLEDGE; PREGNANT WOMAN; PRENATAL SCREENING; QUALITATIVE RESEARCH; SWEDEN; WEB BASED DECISION AID; CONGENITAL DISORDER; DECISION SUPPORT SYSTEM; PERCEPTION; PREGNANCY; PRENATAL DIAGNOSIS; PSYCHOLOGY;

ADULT; CHOICE BEHAVIOR; CONGENITAL ABNORMALITIES; DECISION MAKING; DECISION SUPPORT TECHNIQUES; FEMALE; HUMANS; INTERNET; PERCEPTION; PREGNANCY; PREGNANT WOMEN; PRENATAL DIAGNOSIS; QUALITATIVE RESEARCH; SWEDEN;

EID: 84987667330     PISSN: None     EISSN: 14712393     Source Type: Journal    
DOI: 10.1186/s12884-016-1057-y     Document Type: Article

References (36)

1. Mansfield B. The social nature of natural childbirth. Soc Sci Med. 2008;66(5):1084-94.
2. Lupton D. Risk and the ontology of pregnant embodiment. New York: Cambridge University Press; 1999.
3. Waldenström U. Normal childbirth and evidence based practice. Women Birth. 2007;20(4):175-80.
4. Stanton K, Mwanri L. Global Maternal and Child Health Outcomes: the role of obstetric ultrasound in low resource settings. J Prev Med. 2013;1(3):22-9.
5. Marteau TM, Dormandy E, Michie S. A measure of informed choice. Health Expect. 2001;4(2):99-108.
6. Green JM, Hewison J, Bekker HL, Bryant LD, Cuckle HS. Psychosocial aspects of genetic screening of pregnant women and newborns: a systematic review. Health Technol Assess 2004; 8(33).
7. Ferm Widlund K, Gunnarsson C, Nordin K, Hansson MG. Pregnant women are satisfied with the information they receive about prenatal diagnosis, but are their decisions well informed? Acta Obstet Gynecol Scand. 2009;88(10):1128-32.
8. Åhman A, Lindgren P, Sarkadi A. Facts first, then reaction - Expectant fathers' experiences of an ultrasound screening identifying soft markers. Midwifery. 2012;28(5):e667-75.
9. Åhman A, Runestam K, Sarkadi A. Did I really want to know this? Pregnant women's reaction to detection of a soft marker during ultrasound screening. Patient Educ Couns. 2010;81(1):87-93.
10. The Swedish Pregnancy Register Annual Report 2013-2014. Available at: https://www.medscinet.com/GR/app/Uploads/hemsida/GR_%C3%85rsrapport-2013_20141113.pdf. Accessed 25 Aug 2016.
11. Ekelin M, Crang-Svalenius E, Dykes A. A qualitative study of mothers' and fathers' experiences of routine ultrasound examination in Sweden. Midwifery. 2004;20(4):335-44.
12. Ingvoldstad C, Georgsson Öhman S, Lindgren P. Implementation of combined ultrasound and biochemistry for risk evaluation of chromosomal abnormalities during the first trimester in Sweden. Acta Obstet Gynecol Scand. 2014;93(9):868-73.
13. The Swedish National Board of Health and Welfare: Prenatal diagnosis and preimplantation genetic diagnosis (in Swedish). Stockholm.; 2012. Avaliable at: http://www.socialstyrelsen.se/publikationer2012/2012-12-34. Accessed 13 Sept 2015.
14. Larsson M. A descriptive study of the use of the Internet by women seeking pregnancy-related information. Midwifery. 2009;25(1):14-20.
15. Statistics Sweden I, R&D and IT Unit. Use of computers and the Internet by private persons in 2012. Stockholm: Statistics Sweden, Investments, R&D and IT Unit; 2013. Avaliable at: http://www.scb.se/statistik/_publikationer/le0108_2012a01_br_it01br1301.pdf.
16. Johansson M, Rubertsson C, Rådestad I, Hildingsson I. The Internet: one important source for pregnancy and childbirth information among prospective fathers. J Mens Health. 2010;7(3):249-58.
17. Vlemmix F, Warendorf JK, Rosman AN, Kok M, Mol BWJ, Morris JM, Nassar N. Decision aids to improve informed decision-making in pregnancy care: a systematic review. BJOG. 2013;120(3):257-66.
18. Dugas M, Shorten A, Dubé E, Wassef M, Bujold E, Chaillet N. Decision aid tools to support women's decision making in pregnancy and birth: A systematic review and meta-analysis. Soc Sci Med. 2012;74(12):1968-78.
19. Nagle C, Gunn J, Bell R, Lewis S, Meiser B, Metcalfe S, Ukoumunne O, Halliday J. Use of a decision aid for prenatal testing of fetal abnormalities to improve women's informed decision making: a cluster randomised controlled trial [ISRCTN22532458]. BJOG. 2008;115(3):339-47.
20. Kuppermann M, Norton ME, Gates E, Gregorich SE, Learman LA, Nakagawa S, Feldstein VA, Lewis J, Washington AE, Nease RFJ. Computerized prenatal genetic testing decision-assisting tool: a randomized controlled trial. Obstet Gynecol. 2009;113(1):53-63.
21. Stacey D, Bennett CL, Barry M, Col NF, Eden KB, Holmes-Rovner M, Llewellyn-Thomas H, Lyddiatt A, Légaré F, Thomson R. Decision aids for people facing health treatment or screening decisions (Review). Cochrane Database Syst Rev 2011; 10
22. O'Connor AM, Tugwell P, Wells GA, Elmslie T, Jolly E, Hollingworth G, McPherson R, Bunn H, Graham I, Drake E. A decision aid for women considering hormone therapy after menopause: decision support framework and evaluation. Patient Educ Couns. 1998;33(3):267-79.
23. Elwyn G, O'Connor A, Bennett C, Newcombe R, Politi M, Durand M-A, Drake E, Joseph-Williams N, Khangura S, Saarimaki A, et al. Assessing the quality of decision support technologies using the international patient decision aid standards instrument (IPDASi). PLoS One. 2009;4:e:4705.
24. Update of the International Patient Decision Aids Standards (IPDAS) Collaboration's Background Document. Using Personal Stories. Chapter E. [ http://www.ipdas.ohri.ca/IPDAS-Chapter-E.pdf ]. Accessed 12 May 2015.
25. Malterud K. Systematic text condensation: A strategy for qualitative analysis. Scand J Public Health. 2012;40(8):795-805.
26. Slovic P. Affect, Reason, Risk and Rationality. Newsletter from European Working Group "Multiple Criteria Decision Aiding". 2006;Serie 3(13):1-5.
27. Skirton H, Barr O. Antenatal screening and informed choice: a cross-sectional survey of parents and professionals. Midwifery. 2010;26(6):596-602.
28. Williams RA, Dheensa S, Metcalfe A. Men's involvement in antenatal screening: A qualitative pilot study using e-mail. Midwifery. 2011;27(6):861-6.
29. Lawson KL, Pierson RA. J Obstet Gynaecol CanMaternal Decisions Regarding Prenatal Diagnosis: Rational Choices or Sensible Decisions? J Obstet Gynaecol Can. 2007;29(3):240-6.
30. Ettorre E. Reproductive Genetics, Gender and the Body: 'Please Doctor, may I have a Normal Baby?'. Sociology. 2000;34(3):403-20.
31. Williams C, Sandall J, Lewando-Hundt G, Heyman B, Spencer K, Grellier R. Women as moral pioneers? Experiences of first trimester antenatal screening. Soc Sci Med. 2005;61(9):1983-92.
32. García E, Timmermans DRM, van Leeuwen E. Reconsidering prenatal screening: an empirical-ethical approach to understand moral dilemmas as a question of personal preferences. J Med Ethics. 2009;35(7):410-4.
33. Sawka AM, Straus S, Gafni A, Meiyappan S, O'Brien MA, Brierley JD, Tsang RW, Rotstein L, Thabane L, Rodin G, et al. A usability study of a computerized decision aid to help patients with, early stage papillary thyroid carcinoma in, decision-making on adjuvant radioactive iodine treatment. Patient Educ Couns. 2011;84(2):e24-7.
34. Ozanne E, Howe R, Omer Z, Esserman L. Development of a personalized decision aid for breast cancer risk reduction and management. BMC Med Inform Decis Mak. 2014;14(1):4.
35. Rogers EM. Diffusion of innovations. 5th ed. New York: Free Press; 2003.
36. O'Connor AM. Validation of a Decisional Conflict Scale. Med Decis Making. 1995;15(1):25-30.