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 journalArticle

61 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.
LanguageEnglish
Pages1561-1573
JournalSOCIAL SCIENCE and MEDICINE
Volume69
Issue number11
DOIs
Publication statusPublished - 2009

Fingerprint

Down Syndrome
decision-making process
decision making
social dilemma
midwife
social science
autonomy
inclusion
examination

Keywords

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

Cite this

@article{b1d2096994b4492cb292b84900d60acc,
title = "A meta-synthesis of pregnant women’s decision-making processes with regard to antenatal screening for Down syndrome",
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.",
keywords = "Meta-synthesis, Antenatal screening, Down syndrome, Women, Decision-making, Pregnancy",
author = "Bernie Reid and Marlene Sinclair and Owen Barr and Frank Dobbs and Grainne Crealey",
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.",
year = "2009",
doi = "10.1016/j.socscimed.2009.09.006",
language = "English",
volume = "69",
pages = "1561--1573",
journal = "Social Science and Medicine",
issn = "0277-9536",
publisher = "Elsevier",
number = "11",

}

A meta-synthesis of pregnant women’s decision-making processes with regard to antenatal screening for Down syndrome. / Reid, Bernie; Sinclair, Marlene; Barr, Owen; Dobbs, Frank; Crealey, Grainne.

In: SOCIAL SCIENCE and MEDICINE, Vol. 69, No. 11, 2009, p. 1561-1573.

Research output: Contribution to journalArticle

TY - JOUR

T1 - A meta-synthesis of pregnant women’s decision-making processes with regard to antenatal screening for Down syndrome

AU - Reid, Bernie

AU - Sinclair, Marlene

AU - Barr, Owen

AU - Dobbs, Frank

AU - Crealey, Grainne

N1 - 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.

PY - 2009

Y1 - 2009

N2 - 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.

AB - 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.

KW - Meta-synthesis

KW - Antenatal screening

KW - Down syndrome

KW - Women

KW - Decision-making

KW - Pregnancy

U2 - 10.1016/j.socscimed.2009.09.006

DO - 10.1016/j.socscimed.2009.09.006

M3 - Article

VL - 69

SP - 1561

EP - 1573

JO - Social Science and Medicine

T2 - Social Science and Medicine

JF - Social Science and Medicine

SN - 0277-9536

IS - 11

ER -