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01-08-2017 | Original Research

A Qualitative Study of Factors Influencing Decision-Making after Prenatal Diagnosis of down Syndrome

Authors: Amy R. Reed, Kathryn L. Berrier

Published in: Journal of Genetic Counseling | Issue 4/2017

Abstract

Previous research has identified twenty-six factors that may affect pregnancy management decisions following prenatal diagnosis of DS; however, there is no consensus about the relative importance or effects of these factors. In order to better understand patient decision-making, we conducted expansive cognitive interviews with nine former patients who received a prenatal diagnosis of DS. Our results suggest that patients attached unique meanings to factors influencing decision-making regardless of the pregnancy outcome. Nineteen of the twenty-six factors previously studied and four novel factors (rationale for testing, information quality, pregnancy experience, and perception of parenting abilities and goals) were found to be important to decision-making. We argue that qualitative studies can help characterize the complexity of decision-making following prenatal diagnosis of DS.

All participants in our study received genetic counseling at the time of diagnosis, so this particular factor may not be relevant to our study.

ACOG Practice Bulletin 163: Screening for Fetal Aneuploidy. (2016). Retreived from http://www.acog.org/Resources-And-Publications/Practice-Bulletins-List.

Balkan, M., Kalkanli, S., Akbas, H., Yalinkaya, A., Alp, M. N., & Budak, T. (2010). Parental decisions regarding a prenatally detected fetal chromosomal abnormality and the impact of genetic counseling: an analysis of 38 cases with aneuploidy in Southeast Turkey. Journal of Genetic Counseling, 19(3), 241–246.CrossRefPubMed

Beatty, P., Willis, G., & Schechter, S. (1997). Evaluating the generalizability of cognitive interview findings. In Seminar on statistical methodology in the public service: Statistical policy working paper 26 (pp. 353–362). Washington, DC: Survey Research Methods, American Statistical Association, 1142–1147.

Bell, M., & Stoneman, Z. (2000). Reactions to prenatal testing: reflection of religiosity and attitudes toward abortion and people with disabilities. American Journal of Mental Retardation, 105(1), 1–13.CrossRefPubMed

Britt, D., Risinger, S., Miller, V., Mans, M., Krivchenia, E., & Evans, M. (2000). Determinants of parental decisions after the prenatal diagnosis of down syndrome: bringing in context. American Journal of Medical Genetics, 93(5), 410–416.CrossRefPubMed

Bryant, L., Hewison, J., & Green, J. (2005). Attitudes towards prenatal diagnosis and termination in women who have a sibling with Down’s syndrome. Journal of Reproductive Infant Psychology, 23(2), 181–198.CrossRef

Collins, D. (2003). Pretesting survey instruments: an overview of cognitive methods. Quality of Life Research, 12, 229–238.CrossRefPubMed

Devers, P., Cronister, A., Ormond, K., Facio, F., Brasington, C., & Flodman, P. (2013). Noninvasive prenatal testing/ noninvasive prenatal diagnosis: the position of the National Society of genetic counselors. Journal of Genetic Counseling, 22(3), 291–295.CrossRefPubMed

Drugan, A., Greb, A., Johnson, M. P., Krivchenia, E., Uhlmann, W., Moghissi, K., et al. (1990). Determinants of parental decisions to abort for chromosome abnormalities. Prenatal Diagnosis, 10(8), 483–490.CrossRefPubMed

Evans, M., Sobiecki, M., Krivchenia, E., Duquette, D., Drugan, A., Hume, R., et al. (1996). Parental decisions to terminate/continue following abnormal cytogenetic prenatal diagnosis: “what” is still more important than “when”. American Journal of Medical Genetics, 61(4), 353–355.CrossRefPubMed

Grubs, R., & Piantanida, M. (2010). Grounded theory in genetic counseling research: an interpretive perspective. Journal of Genetic Counseling, 19, 99–111.CrossRefPubMed

Hawkins, A., Stenzel, A., Taylor, J., Chock, V., & Hudgins, L. (2013). Variables influencing pregnancy termination following prenatal diagnosis of fetal chromosome abnormalities. Journal of Genetic Counseling, 22, 238–248.CrossRefPubMed

Hurford, E., Hawkins, A., Hudgins, L., & Taylor, J. (2013). The decision to continue a pregnancy affected by down syndrome: timing of decision and satisfaction with receiving a prenatal diagnosis. Journal of Genetic Counseling, 22, 587–593.CrossRefPubMed

Korenromp, M., Page-Christiaens, G., van den Bout, J., Mulder, E., & Visser, G. (2007). Maternal decision to terminate pregnancy in case of down syndrome. American Journal of Obstetrics and Gynecology, 196(2), 149.e1–149.e11.CrossRef

Lawson, K. (2006). Expectations of the parenting experience and willingness to consider selective termination for down syndrome. Journal of Reproductive and Infant Psychology, 24(1), 43–59.CrossRef

Lawson, K., & Walls-Ingram, S. (2010). Selective abortion for down syndrome: the relation between the quality of intergroup contact, parenting expectations, and willingness to terminate. Journal of Applied Social Psychology, 40(3), 554–578.CrossRef

Leung, T., Ching, C. M., Chang, J., Leung, T., Fung, T., & Lau, T. (2004). Attitudes towards termination of pregnancy among Hong Kong Chinese women attending prenatal diagnosis counselling clinic. Prenatal Diagnosis, 24(7), 546–551.CrossRefPubMed

Levers, M. (2013) Philosophical paradigms, grounded theory, and perspectives on emergence. SAGE Open. 1–6. Accessed via http://sgo.sagepub.com/content/3/4/2158244013517243

Lippman, A. (1999). Embodied knowledge and making sense of prenatal diagnosis. Journal of Genetic Counseling, 8(5), 255–274.CrossRefPubMed

Miller, K., Kepp, V., Wilson, S., & Padilla, J. (2014). Cognitive interviewing methodology. Hoboken: Wiley.CrossRef

Perry, S., Woodall A. L., & Pressman, E. K. (2007). Association of Ultrasound Findings with Decision to Continue Down Syndrome Pregnancies. Public Health Genomics, 10(4), 227–230.

Polkinghorne, D. (2005). Language and meaning: data collection in qualitative research. Journal of Counseling Psychology, 52(2), 137–145.CrossRef

Pryde, P., Drugan, A., Johnson, M. P., Isada, N. B., & Evans, M. (1993). Prenatal diagnosis: choices women make about pursuing testing and acting on abnormal results. Clinical Obstetrics and Gynecology, 36(3), 496–509.CrossRefPubMed

Quadrelli, R., Quadrelli, A., Mechoso, B., Laufer, M., Jaumandreu, C., & Vaglio, A. (2007). 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 Diagnosis, 27(3), 228–232.CrossRef

Rapp, R. (2000). Testing women, testing the fetus: the social impact of amniocentesis in America. New York: Routledge.

Roberts, C., Stough, L., & Parrish, L. (2002). The role of genetic counseling in the elective termination of pregnancies involving fetuses with disabilities. Journal of Special Education, 36(1), 48–55.CrossRefPubMed

Schechtman, K., Gray, D., Baty, J., & Rothman, S. (2002). Decision- making for termination of pregnancies with fetal anomalies: anal- ysis of 53,000 pregnancies. Obstetrics and Gynecology, 99(2), 216–222.PubMed

Shaffer, B., Caughey, A., Norton, M., et al. (2006). Variation in the decision to terminate pregnancy in the setting of fetal aneuploidy. Prenatal Diagnosis, 26(8), 667–671.CrossRefPubMed

Sheets, K., et al. (2011). Practice guidelines for communicating a prenatal or postnatal diagnosis of down syndrome: recommendations of the National Society of genetic counselors. Journal of Genetic Couseling, 20, 432–441.CrossRef

Thomas, G. (2014). Prenatal screening for Down’s syndrome: parent and healthcare practitioner experiences. Sociology Compass, 8(6), 837–850.CrossRef

Verp, M., Bombard, A., Simpson, J., & Elias, S. (1988). Parental decision following prenatal diagnosis of fetal chromosome abnor- mality. American Journal of Medical Genetics, 29(3), 613–622.CrossRefPubMed

Willis, G. (1999). Cognitive interviewing: a “how to” guide. Research Triangle Institute. 1999 Meeting of the American Statistical Association. Research Triangle Park, NC: Research Triangle Institute.

Willis, G. (2005). Cognitive interviewing: a tool for improving questionnaire design. London: Sage.CrossRef

Zlotogora, J. (2002). Parental decisions to abort or continue a pregnancy with an abnormal finding after an invasive prenatal test. Prenatal Diagnosis, 22(2), 1102–1106.CrossRefPubMed

Title: A Qualitative Study of Factors Influencing Decision-Making after Prenatal Diagnosis of down Syndrome
Authors: Amy R. Reed
Kathryn L. Berrier
Publication date: 01-08-2017
Publisher: Springer US
Published in: Journal of Genetic Counseling / Issue 4/2017
Print ISSN: 1059-7700
Electronic ISSN: 1573-3599
DOI: https://doi.org/10.1007/s10897-016-0061-8

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