A meta-synthesis of pregnant women’s decision-making processes with regard to antenatal screening for Down syndrome

Bernie Reid, Marlene Sinclair, Owen Barr, Frank Dobbs, Grainne Crealey

Research output: Contribution to journalArticlepeer-review

83 Citations (Scopus)

Abstract

The diffusion of antenatal screening programmes for Down syndrome has triggered much discussionabout their powerful potential to enhance pregnant women’s autonomy and reproductive choices.Simultaneously, considerable debate has been engendered by concerns that such programmes maydirectly contribute to the emergence of new and complex ethical, legal and social dilemmas for women.Given such discussion and debate, an examination of women’s decision-making within the context ofantenatal screening for Down syndrome is timely. This paper aims to undertake a meta-synthesis ofqualitative studies examining the factors influencing pregnant women’s decisions to accept or declineantenatal screening for Down syndrome. The meta-synthesis aims to create more comprehensiveunderstandings and to develop theory which might enable midwives and other healthcare professionalsto better meet the needs of pregnant women as they make their screening decisions. Ten electronichealth and social science databases were searched together with a hand-search of eleven journals forpapers published in English between 1999 and 2008, using predefined search terms, inclusion andexclusion criteria, and a quality appraisal framework. Nine papers met the criteria for this metasynthesis,providing an international perspective on pregnant women’s decision-making. Twelve themeswere identified by consensus and combined into five core concepts. These core concepts were: destinationunknown; to choose or not to choose; risk is rarely pure and never simple; treading on dreams,and betwixt and between. A conceptual framework is proposed which incorporates these themes andcore concepts, and provides a new insight into pregnant women’s complex decision-making processeswith regard to antenatal screening for Down syndrome. However, further research is necessary todetermine whether or not the development of a model of decision-making may empower pregnantwomen in making choices about screening.
Original languageEnglish
Pages (from-to)1561-1573
JournalSOCIAL SCIENCE and MEDICINE
Volume69
Issue number11
DOIs
Publication statusPublished (in print/issue) - 2009

Bibliographical note

Reference text: Ajzen, I., & Fishbein, M. (1980). Understanding attitudes and predicting social
behaviour. Englewood Cliffs, New Jersey: Prentice Hall.
Arrow, K. J. (1963). Uncertainty and the welfare economics of medical care. American
Economic Review, 53(5), 941–973.
Aspers, P. (2004). Interpretative phenomenology: An approach for qualitative research.
Papers in social research methods qualitative series number 9. London: London
School of Economics and Political Science.
Baillie, C., Smith, J., Hewison, J., & Mason, G. (2000). Ultrasound screening for fetal
abnormality: women’s reactions to false positive results. British Journal of
Health Psychology, 5(4), 377–394.
Barroso, J., Gollop, C. J., Sandelowski, M., Meynell, J., Pearce, P. F., & Collins, L. J.
(2003). The challenges of searching for and retrieving qualitative studies.
Western Journal of Nursing Research, 25(2), 153–178.
Bondas, T., & Hall, E. O. C. (2007). Challenges in approaching meta-synthesis
research. Qualitative Health Research, 17(1), 113–121.
Britten, N., Campbell, R., Pope, C., Donovan, J., & Morgan, M. (2002). Using meta
ethnography to synthesise qualitative research: a worked example. Journal of
Health Services Research and Policy, 17(4), 209–215.
Brown, N., & Webster, A. (2004). New Medical Technologies and Society: Reordering
life. Cambridge: Polity Press Limited.
Buchanan, A., Brock, D. W., Daniels, N., & Wilker, D. (2000). From chance to choice:
Genetics and justice. Cambridge: Cambridge University Press.
Campbell, R., Pound, P., Pope, C., Britten, N., Pill, R., Morgan, M., et al. (2003).
Evaluating meta-ethnography: a synthesis of lay experiences of diabetes and
diabetes care. Social Science & Medicine, 56(4), 671–684.
Chiang, H.-H., Chao, Y.-M., & Yuh, Y.-S. (2006). Informed choice of pregnant women
in prenatal screening tests for Down’s syndrome. Journal of Medical Ethics, 32(5),
273–277.
Cranley, M. S. (1981). Roots of attachment: the relationship of parents with their
unborn. Birth Defects Original Article Series, xvii(6), 59–83.
Denzin, N. (1989). Interpretative interactionism. Newbury Park, California: Sage.
Estabrooks, C. A., Field, P. A., & Morse, J. M. (1994). Aggregating qualitative findings:
an approach to theory development. Qualitative Health Research, 4(4), 503–511.
Fingeld, D. (2003). Meta-synthesis: the state of the art – so far. Qualitative Health
Research, 13(7), 393–904.
Garcia, J., Bricker, L., Henderson, J., Martin, M.-A., Mugford, M., Nielson, J., et al.
(2002). Women’s views of pregnancy ultrasound: a systematic review. Birth,
29(4), 225–250.
Garcia, E., Timmermans, D. R. M., & van Leeuwen, E. (2008). The impact of ethical
beliefs on decisions about prenatal screening tests: searching for justification.
Social Science & Medicine, 66(3), 753–764.
Getz, L., & Kirkengen, A. L. (2003). Ultrasound screening in pregnancy: advancing
technology, soft markers for chromosomal aberrations, and unacknowledged
ethical dilemmas. Social Science & Medicine, 56(10), 2045–2057.
Giddens, A. (1991). Modernity and self-identity: Self and society in the late modern
age. Cambridge: Polity Press.
Gilmore, L. (2006). Perceptions of Down syndrome in the Australian community.
Journal on Developmental Disabilities, 12(1)(Suppl. 2), 59–70.
Guba, E., & Lincoln, Y. (1994). Competing paradigms in qualitative research. In
N. Denzin, & Y. Lincoln (Eds.), Handbook of qualitative research (1st ed.). (pp.
105–117) Thousand Oaks, California: Sage.
Heyman, B., Hundt, G., Sandall, J., Spencer, K., Williams, C., Grellier, R., et al. (2006).
On being at higher risk: a qualitative study of prenatal screening for chromosomal
anomalies. Social Science & Medicine, 62(10), 2360–2372.
Jenson, L. A., & Allen, M. N. (1994). A synthesis of qualitative research on wellnessillness.
Qualitative Health Research, 4(4), 349–369.
Jenson, L. A., & Allen, M. N. (1996). Meta-synthesis of qualitative findings. Qualitative
Health Research, 6(4), 553–560.
Katz Rothman, B. (1994). The tentative pregnancy: Aminocentesis and the sexual
politics of motherhood (2nd ed.). London: Pandora.
Lewando-Hundt, G., Shoham-Vardi, I., Beckerleg, S., Belmaker, I., Kassem, F., & Abu
Jaafar, A. (2001). Knowledge, action and resistance: the selective use of prenatal
screening among Bedouin women of the Negev, Israel. Social Science & Medicine,
52(4), 561–569.
Liamputtong, P., Halliday, J. L., Warren, R., Watson, L. F., & Bell, R. J. (2003). Why do
women decline prenatal screening and diagnosis? Australian women’s
perspective. Women and Health, 37(2), 89–108
Lippman, A. (1994). The genetic construction of testing. In K. Rothenberg, &
E. Thomson (Eds.),Women and prenatal testing (pp. 9–34). Columbus: Ohio State
University Press.
Markens, S., Browner, C. H., & Press, N. (1999). ‘Because of the risks’: how US
pregnant women account for refusing prenatal screening. Social Science &
Medicine, 49(3), 359–369.
Mercer, R. T. (1995). Becoming a mother: Research on maternal identity from Rubin to
the present. New York: Springer.
Nelson, A. M. (2002). A meta-synthesis: mothering other-than-normal children.
Qualitative Health Research, 12(4), 515–530.
Noblit, G., & Hare, R. (1988). Meta-ethnography: Synthesising qualitative studies.
Newbury Park: Sage.
Oakley, A. (1984). The captured womb: A history of the medical care of pregnant
women. Oxford: Basil Blackwell.
O’Byrne, P., & Holmes, D. (2007). The micro-fascism of Plato’s good citizen: producing
(dis)order through the construction of risk. Nursing Philosophy, 8, 93–102.
Paterson, B. L., Thorne, S., & Dewis, M. (1998). Adapting to and managing diabetes.
Image: Journal of Nursing Scholarship, 30(1), 57–62.
Paterson, B. L., Thorne, S. E., Canam, C., & Jillings, C. (2001). Meta-study of qualitative
health research: A practical guide to meta-analysis and meta-synthesis. Thousand
Oaks, California: Sage.
Pilley Edwards, N., & Murphy Lawless, J. (2006). The instability of risk: women’s
perspectives on risk and safety in birth. In A. Symon (Ed.), Risk and choice in
maternity care (pp. 35–49). Edinburgh: Churchill Livingstone.
Pilnick, A. M., Fraser, D. M., & James, D. K. (2004). Presenting and discussing
nuchal translucency screening for fetal abnormality in the UK. Midwifery,
20(1), 82–93.
Rapp, R. (2000). Testing women, testing the fetus. London: Routledge.
Reminnick, L. (2006). The quest for the perfect baby: why do Israeli women seek
prenatal genetic testing? Sociology, 28(1), 21–53.
Rubin, R. (1984). Maternal identity and maternal experience. New York: Springer.
Sallach, D. (October 2003). Interpretative agents. In Proceedings of the agent: Challenges
in social simulation conference. University of Chicago.
Sandelowski, M., & Barroso, J. (2003a). Focus on research methods: towards a metasynthesis
of qualitative findings on motherhood in HIV positive women.
Research in Nursing and Health, 26(2), 153–170.
Sandelowski, M., & Barroso, J. (2003b). Classifying the findings in qualitative
studies. Qualitative Health Research, 13(7), 905–923.
Sandelowski, M., & Barroso, J. (2005). The travesty of choosing after positive
prenatal diagnosis. Journal of Gynaecological and Neonatal Nursing, 37,
307–318.
Sandelowski, M., Docherty, S., & Emden, C. (1997). Qualitative meta-synthesis:
issues and techniques. Research in Nursing and Health, 20, 365–371.
Schrieber, R., Crooks, D., & Stern, P. N. (1997). Qualitative meta-analysis. In
J. M. Morse (Ed.), Completing a qualitative project: Details and dialogue (pp. 311–
326). Thousand Oaks, California: Sage.
Schutz, A. (1962)Collected papers, Vol. 1. The Hague: Martinus Nijhoff.
Scully, J. L., Banks, S., & Shakespeare, T. W. (2006). Chance, choice and control:
lay debate on prenatal social sex selection. Social Science & Medicine, 63(1),
21–31.
Sher, C., Romano-Zelekha, O., Green, M., & Shohat, T. (2003). Factors affecting
performance of prenatal genetic testing by Israeli Jewish women. American
Journal of Medical Genetics, 120A, 418–422.
Suter, A. M. (2002). The routinization of prenatal testing. American Journal of Law
and Medicine, 28(2 & 3), 233–270.
Thornton, R., & Nardi, P. M. (1975). The dynamics of role acquisition. American
Journal of Sociology, 80(4), 870–885.
Turner, V. (1969). The ritual process: Structure and anti-structure. Chicago: Aldine
Publishing Company.
Vassy, C. (2006). From a genetic innovation to mass health programmes: the
diffusion of Down’s syndrome prenatal screening and diagnostic techniques in
France. Social Science & Medicine, 63(8), 2041–2051.
Walsh, D., & Downe, S. (2005). Meta-synthesis method for qualitative research:
a literature review. Journal of Advanced Nursing, 50(2), 204–211.
Walsh, D., & Downe, S. (2006). Appraising the quality of qualitative research.
Midwifery, 22(2), 108–119.
Ward, P., & Muir Gray, J. A. (2002). Antenatal screening service for Down syndrome in
England: 2001. A report to the National Screening Committee. London: National
Screening Committee.
Williams, C., Sandall, J., Lewando-Hundt, G., Heyman, B., Spencer, K., & Grellier, R.
(2005). Women as moral pioneers? Experiences of first trimester antenatal
screening. Social Science & Medicine, 61(9), 1983–1992.
Wohlgemuth, N. R. (2006). Prenatal testing decisions: Women’s needs and well-being.
Saskatoon, Canada: University of Saskatchewan.
Zimmer, L. (2006). Qualitative meta-synthesis: a question of dialoguing with texts.
Journal of Advanced Nursing, 53(3), 311–318.

Keywords

  • Meta-synthesis
  • Antenatal screening
  • Down syndrome
  • Women
  • Decision-making
  • Pregnancy

Fingerprint

Dive into the research topics of 'A meta-synthesis of pregnant women’s decision-making processes with regard to antenatal screening for Down syndrome'. Together they form a unique fingerprint.

Cite this