Journal of Pregnancy
Volume 2017 (2017), Article ID 4975091, 13 pages
https://doi.org/10.1155/2017/4975091
A Framework for Describing the Influence of Service Organisation and Delivery on Participation in Fetal Anomaly Screening in England
1Department of Public Health, Saudi Electronic University, P.O. Box 93499, Riyadh 11673, Saudi Arabia
2School of Healthcare, University of Leeds, Baines Wing, Room 3.10, Leeds LS2 9JT, UK
3School of Healthcare, University of Leeds, 2.25 Baines Wing, Leeds LS2 9UT, UK
4Margaret and Wallace McCain Chair in Human Development and Health, University of Prince Edward Island, Charlottetown, PE, Canada C1A 4P3
Correspondence should be addressed to Hyacinth O. Ukuhor; moc.oohay@0002oocayh
Received 29 August 2016; Revised 14 February 2017; Accepted 22 February 2017; Published 22 March 2017
Academic Editor: Jeffrey Keelan
Copyright © 2017 Hyacinth O. Ukuhor et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Linked References
- NHS FASP, Fetal Anomaly Screening Programme: Consent Standard and Guidance, 2011, http://fetalanomaly.screening.nhs.uk/standardsandpolicies.
- NICE, “Antenatal care: Routine care for the healthy pregnant woman. Full guideline. National Institute for Health and Clinical Evidence,” 2008, http://www.nice.org.uk/guidance/index.jsp?action=byID&o=11947.
- D. L. Frosch, S. G. May, K. A. S. Rendle, C. Tietbohl, and G. Elwyn, “Authoritarian physicians and patients' fear of being labeled “difficult” among key obstacles to shared decision making,” Health Affairs, vol. 31, no. 5, pp. 1030–1038, 2012. View at Publisher · View at Google Scholar · View at Scopus
- A. Pilnick, ““It's something for you both to think about”: choice and decision making in nuchal translucency screening for Down's syndrome,” Sociology of Health and Illness, vol. 30, no. 4, pp. 511–530, 2008. View at Publisher · View at Google Scholar · View at Scopus
- A. Pilnick, “‘It's just one of the best tests that we've got at the moment’: the presentation of nuchal translucency screening for fetal abnormality in pregnancy,” Discourse & Society, vol. 15, no. 4, pp. 451–465, 2004. View at Publisher · View at Google Scholar · View at Scopus
- J. McNeill, F. Alderdice, R. Rowe, D. Martin, and J. C. Dornan, “Down's syndrome screening in Northern Ireland: women's reasons for accepting or declining serum testing,” Evidence Based Midwifery, vol. 7, no. 3, pp. 76–83, 2009. View at Google Scholar
- O. Barr and H. Skirton, “Informed decision making regarding antenatal screening for fetal abnormality in the United Kingdom: a qualitative study of parents and professionals,” Nursing and Health Sciences, vol. 15, no. 3, pp. 318–325, 2013. View at Publisher · View at Google Scholar · View at Scopus
- NHS England, Five Year Forward View, HM Government, London, UK, 2014.
- S. Ahmed, L. D. Bryant, and P. Cole, “Midwives' perceptions of their role as facilitators of informed choice in antenatal screening,” Midwifery, vol. 29, no. 7, pp. 745–750, 2013. View at Publisher · View at Google Scholar · View at Scopus
- J. McNeill and F. Alderdice, “Exploring the perspective of midwives involved in offering serum screening for Down's syndrome in Northern Ireland,” Journal of Clinical Nursing, vol. 18, no. 20, pp. 2888–2896, 2009. View at Publisher · View at Google Scholar · View at Scopus
- DOH, Equity and Excellence: Liberating the NHS, Department of Health London, London, UK, 2010.
- B. Khoshnood, P. Pryde, B. Blondel, and K. S. Lee, “Socioeconomic and state-level differences in prenatal diagnosis and live birth prevalence of Down's syndrome in the United States,” Revue d'Epidemiologie et de Sante Publique, vol. 51, no. 6, pp. 617–627, 2003. View at Google Scholar · View at Scopus
- L. D. Bryant, J. M. Green, and J. Hewison, “Understandings of Down's syndrome: a Q methodological investigation,” Social Science & Medicine, vol. 63, no. 5, pp. 1188–1200, 2006. View at Publisher · View at Google Scholar · View at Scopus
- M. Kuppermann, L. A. Learman, E. Gates et al., “Beyond race or ethnicity and socioeconomic status: predictors of prenatal testing for Down syndrome,” Obstetrics & Gynecology, vol. 107, no. 5, pp. 1087–1097, 2006. View at Publisher · View at Google Scholar · View at Scopus
- M. P. Fransen, M.-L. Essink-Bot, A. Oenema, J. P. Mackenbach, E. A. P. Steegers, and H. I. J. Wildschut, “Ethnic differences in determinants of participation and non-participation in prenatal screening for Down syndrome: a theoretical framework,” Prenatal Diagnosis, vol. 27, no. 10, pp. 938–950, 2007. View at Publisher · View at Google Scholar · View at Scopus
- D.-K. Li, K. Karlberg, S. Wi, and C. Norem, “Factors influencing women's acceptance of prenatal screening tests,” Prenatal Diagnosis, vol. 28, no. 12, pp. 1136–1143, 2008. View at Publisher · View at Google Scholar · View at Scopus
- S. Maxwell, K. Brameld, C. Bower et al., “Socio-demographic disparities in the uptake of prenatal screening and diagnosis in Western Australia,” Australian and New Zealand Journal of Obstetrics and Gynaecology, vol. 51, no. 1, pp. 9–16, 2011. View at Publisher · View at Google Scholar · View at Scopus
- V. Seror and Y. Ville, “Women's attitudes to the successive decisions possibly involved in prenatal screening for Down syndrome: how consistent with their actual decisions?” Prenatal Diagnosis, vol. 30, no. 11, pp. 1086–1093, 2010. View at Publisher · View at Google Scholar · View at Scopus
- M. Tsouroufli, “Routinisation and constraints on informed choice in a one-stop clinic offering first trimester chromosomal antenatal screening for Down's syndrome,” Midwifery, vol. 27, no. 4, pp. 431–436, 2011. View at Publisher · View at Google Scholar · View at Scopus
- C. Williams, J. Sandall, G. Lewando-Hundt, B. Heyman, K. Spencer, and R. Grellier, “Women as moral pioneers? Experiences of first trimester antenatal screening,” Social Science & Medicine, vol. 61, no. 9, pp. 1983–1992, 2005. View at Publisher · View at Google Scholar · View at Scopus
- V. Seavilleklein, “Challenging the rhetoric of choice in prenatal screening,” Bioethics, vol. 23, no. 1, pp. 68–77, 2009. View at Publisher · View at Google Scholar · View at Scopus
- E. Dormandy, R. Hooper, S. Michie, and T. M. Marteau, “Informed choice to undergo prenatal screening: a comparison of two hospitals conducting testing either as part of a routine visit or requiring a separate visit,” Journal of Medical Screening, vol. 9, no. 3, pp. 109–114, 2002. View at Publisher · View at Google Scholar · View at Scopus
- E. Dormandy, S. Michie, R. Hooper, and T. M. Marteau, “Informed choice in antenatal Down syndrome screening: a cluster-randomised trial of combined versus separate visit testing,” Patient Education and Counseling, vol. 61, no. 1, pp. 56–64, 2006. View at Publisher · View at Google Scholar · View at Scopus
- H. Skirton and O. Barr, “Influences on uptake of antenatal screening for down syndrome: a review of the literature,” Evidence Based Midwifery, vol. 5, no. 1, pp. 4–9, 2007. View at Google Scholar · View at Scopus
- C. Williams, P. Alderson, and B. Farsides, “Is nondirectiveness possible within the context of antenatal screening and testing?” Social Science and Medicine, vol. 54, no. 3, pp. 339–347, 2002. View at Publisher · View at Google Scholar · View at Scopus
- B. Farsides, C. Williams, and P. Alderson, “Aiming towards ‘moral equilibrium’: Health care professionals' views on working within the morally contested field of antenatal screening,” Journal of Medical Ethics, vol. 30, no. 5, pp. 505–509, 2004. View at Publisher · View at Google Scholar · View at Scopus
- S. M. Lewis, F. N. Cullinane, A. J. Bishop, L. S. Chitty, T. M. Marteau, and J. L. Halliday, “A comparison of Australian and UK obstetricians' and midwives' preferences for screening tests for Down syndrome,” Prenatal Diagnosis, vol. 26, no. 1, pp. 60–66, 2006. View at Publisher · View at Google Scholar · View at Scopus
- H. Gottfredsdóttir, J. Sandall, and K. Björnsdóttir, “'This is just what you do when you are pregnant': a qualitative study of prospective parents in Iceland who accept nuchal translucency screening,” Midwifery, vol. 25, no. 6, pp. 711–720, 2009. View at Publisher · View at Google Scholar · View at Scopus
- A. Park and M. Mathews, “Women's decisions about maternal serum screening testing: a qualitative study exploring what they learn and the role prenatal care providers play,” Women and Birth, vol. 22, no. 2, pp. 73–78, 2009. View at Publisher · View at Google Scholar · View at Scopus
- M. Bakker, E. Birnie, E. Pajkrt, C. M. Bilardo, and R. J. M. Snijders, “Low uptake of the combined test in the Netherlands—which factors contribute?” Prenatal Diagnosis, vol. 32, no. 13, pp. 1305–1312, 2012. View at Publisher · View at Google Scholar · View at Scopus
- S. G. Hertig, S. Cavalli, C. Burton-Jeangros, and B. S. Elger, “'Doctor, what would you do in my position?' Health professionals and the decision-making process in pregnancy monitoring,” Journal of Medical Ethics, vol. 40, no. 5, pp. 310–314, 2014. View at Publisher · View at Google Scholar · View at Scopus
- E. Dormandy and T. M. Marteau, “Uptake of a prenatal screening test: the role of healthcare professionals' attitudes towards the test,” Prenatal Diagnosis, vol. 24, no. 11, pp. 864–868, 2004. View at Publisher · View at Google Scholar · View at Scopus
- M. Van Den Berg, D. R. M. Timmermans, J. H. Kleinveld et al., “Are counsellors' attitudes influencing pregnant women's attitudes and decisions on prenatal screening?” Prenatal Diagnosis, vol. 27, no. 6, pp. 518–524, 2007. View at Publisher · View at Google Scholar · View at Scopus
- C. Williams, P. Alderson, and B. Farsides, “Dilemmas encountered by health practitioners offering nuchal translucency screening: A Qualitative Case Study,” Prenatal Diagnosis, vol. 22, no. 3, pp. 216–220, 2002. View at Publisher · View at Google Scholar · View at Scopus
- A. M. Pilnick, D. M. Fraser, and D. K. James, “Presenting and discussing nuchal translucency screening for fetal abnormality in the UK,” Midwifery, vol. 20, no. 1, pp. 82–93, 2004. View at Publisher · View at Google Scholar · View at Scopus
- C. Nagle, S. Lewis, B. Meiser, J. Gunn, J. Halliday, and R. Bell, “Exploring general practitioners' experience of informing women about prenatal screening tests for foetal abnormalities: a qualitative focus group study,” BMC Health Services Research, vol. 8, article 114, 2008. View at Publisher · View at Google Scholar · View at Scopus
- B. Winquist, K. Ogle, and N. Muhajarine, “Exploring physicians' views and values in relation to maternal serum screening,” Journal of Obstetrics and Gynaecology Canada, vol. 30, no. 7, pp. 564–572, 2008. View at Publisher · View at Google Scholar · View at Scopus
- A. Pilnick and O. Zayts, ““Let's have it tested first”: choice and circumstances in decision-making following positive antenatal screening in Hong Kong,” Sociology of Health and Illness, vol. 34, no. 2, pp. 266–282, 2012. View at Publisher · View at Google Scholar · View at Scopus
- P. A. Boyd, C. DeVigan, B. Khoshnood et al., “Survey of prenatal screening policies in Europe for structural malformations and chromosome anomalies, and their impact on detection and termination rates for neural tube defects and Down's syndrome,” BJOG: An International Journal of Obstetrics & Gynaecology, vol. 115, no. 6, pp. 689–696, 2008. View at Publisher · View at Google Scholar · View at Scopus
- N. M. Crombag, J. M. Bensing, R. Iedema-Kuiper, P. C. Schielen, and G. H. Visser, “Determinants affecting pregnant women's utilization of prenatal screening for Down syndrome: a review of the literature,” Journal of Maternal-Fetal and Neonatal Medicine, vol. 26, no. 17, pp. 1676–1681, 2013. View at Publisher · View at Google Scholar · View at Scopus
- N. M. T. H. Crombag, R. V. van Schendel, P. C. J. I. Schielen, J. M. Bensing, and L. Henneman, “Present to future: what the reasons for declining first-trimester combined testing tell us about accepting or declining cell-free DNA testing,” Prenatal Diagnosis, vol. 36, no. 6, pp. 587–590, 2016. View at Publisher · View at Google Scholar · View at Scopus
- Walker and Tarn, Antenatal and Child Health Screening in Yorkshire and the Humber. Status Report 2011/2012, NHS Yorkshire and the Humber, Yorkshire, UK, 2011.
- C. Lewis, M. Hill, C. Silcock, R. Daley, and L. S. Chitty, “Non-invasive prenatal testing for trisomy 21: a cross-sectional survey of service users' views and likely uptake,” BJOG, vol. 121, no. 5, pp. 582–594, 2014. View at Google Scholar
- R. Tischler, L. Hudgins, Y. J. Blumenfeld, H. T. Greely, and K. E. Ormond, “Noninvasive prenatal diagnosis: pregnant women's interest and expected uptake,” Prenatal Diagnosis, vol. 31, no. 13, pp. 1292–1299, 2011. View at Publisher · View at Google Scholar · View at Scopus
- H. Skirton and O. Barr, “Antenatal screening and informed choice: a cross-sectional survey of parents and professionals,” Midwifery, vol. 26, no. 6, pp. 596–602, 2010. View at Publisher · View at Google Scholar · View at Scopus
- R. A. Williams, S. Dheensa, and A. Metcalfe, “Men's involvement in antenatal screening: a qualitative pilot study using e-mail,” Midwifery, vol. 27, no. 6, pp. 861–866, 2011. View at Publisher · View at Google Scholar · View at Scopus
- A. Donabedian, Explorations in Quality Assessment and Monitoring: The Definition of Quality and Approaches to Its Assessment, Health Administration Press, Ann Arbor, Mich, USA, 1980.
- A. Donabedian, “The quality of care: how can it be assessed?” The Journal of the American Medical Association, vol. 260, no. 12, pp. 1743–1748, 1988. View at Publisher · View at Google Scholar · View at Scopus
- L. A. Hulton, Z. Matthews, and R. W. Stones, Framework for the Evaluation of Quality of Care in Maternity Services, University of Southampton, Southampton, UK, 2000.
- F. Morestin, A. Bicaba, J. D. D. Sermé, and P. Fournier, “Evaluating quality of obstetric care in low-resource settings: building on the literature to design tailor-made evaluation instruments—an illustration in Burkina Faso,” BMC Health Services Research, vol. 10, no. 1, article 20, 2010. View at Publisher · View at Google Scholar · View at Scopus
- K. G. Shojania, K. M. McDonald, R. M. Wachter et al., Closing the Quality Gap: A Critical Analysis of Quality Improvement Strategies Volume 7, Care Coordination, U.S. Dept. of Health and Human Services, Public Health Service, Agency for Healthcare Research and Quality, Rockville, Md, USA, 2007.
- K. Tates, M. Zwaanswijk, R. Otten et al., “Online focus groups as a tool to collect data in hard-to-include populations: examples from paediatric oncology,” BMC Medical Research Methodology, vol. 9, no. 1, article 15, 2009. View at Publisher · View at Google Scholar · View at Scopus
- K. Reed, “Making men matter: exploring gender roles in prenatal blood screening,” Journal of Gender Studies, vol. 20, no. 1, pp. 55–66, 2011. View at Publisher · View at Google Scholar · View at Scopus
- B. Hunter, “The importance of reciprocity in relationships between community-based midwives and mothers,” Midwifery, vol. 22, no. 4, pp. 308–322, 2006. View at Publisher · View at Google Scholar · View at Scopus
- E. R. Van Teijlingen, V. Hundley, A.-M. Rennie, W. Graham, and A. Fitzmaurice, “Materity satisfaction studies and their limitations: ‘What is, must still be best’,” Birth, vol. 30, no. 2, pp. 75–82, 2003. View at Publisher · View at Google Scholar · View at Scopus
- T. L. Zakrison, P. Cabezas, E. Valle, J. Kornfeld, C. Muntaner, and S. Soklaridis, “The perceived consequences of gold mining in Postwar El Salvador: a qualitative study,” American Journal of Public Health, vol. 105, no. 11, pp. 2382–2387, 2015. View at Publisher · View at Google Scholar · View at Scopus
- J. M. Morse and P. A. Field, Nursing Research: The Application of Qualitative Approaches, Nelson Thornes, 1996.
- U. H. Graneheim and B. Lundman, “Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness,” Nurse Education Today, vol. 24, no. 2, pp. 105–112, 2004. View at Publisher · View at Google Scholar · View at Scopus
- A. Lacey and D. Luff, Qualitative Research Analysis, The NIHR RDS for the East Midlands / Yorkshire & the Humber, 2007.
- A. Strauss and J. M. Corbin, Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory, Sage, 1998.
- A. Bryant and K. Charmaz, The SAGE Handbook of Grounded Theory, Sage, 2007.
- A. Alsulaiman, J. Hewison, K. K. Abu-Amero, S. Ahmed, J. M. Green, and J. Hirst, “Attitudes to prenatal diagnosis and termination of pregnancy for 30 conditions among women in Saudi Arabia and the UK,” Prenatal Diagnosis, vol. 32, no. 11, pp. 1109–1113, 2012. View at Publisher · View at Google Scholar · View at Scopus
- J. Hewison, J. M. Green, S. Ahmed et al., “Attitudes to prenatal testing and termination of pregnancy for fetal abnormality: a comparison of white and Pakistani women in the UK,” Prenatal Diagnosis, vol. 27, no. 5, pp. 419–430, 2007. View at Publisher · View at Google Scholar · View at Scopus
- D. J. Burgess, J. Warren, S. Phelan, J. Dovidio, and M. van Ryn, “Stereotype threat and health disparities: what medical educators and future physicians need to know,” Journal of General Internal Medicine, vol. 25, no. 2, pp. 169–177, 2010. View at Google Scholar · View at Scopus
- S. Markens, C. H. Browner, and N. Press, ““Because of the risks”: How US pregnant women account for refusing prenatal screening,” Social Science and Medicine, vol. 49, no. 3, pp. 359–369, 1999. View at Publisher · View at Google Scholar · View at Scopus
- H.-H. Chiang, Y.-M. Y. Chao, and Y.-S. Yuh, “Informed choice of pregnant women in prenatal screening tests for Down's syndrome,” Journal of Medical Ethics, vol. 32, no. 5, pp. 273–277, 2006. View at Publisher · View at Google Scholar · View at Scopus
- D. Davis and K. Walker, “The corporeal, the social and space/place: exploring intersections from a midwifery perspective in New Zealand,” Gender, Place and Culture, vol. 17, no. 3, pp. 377–391, 2010. View at Publisher · View at Google Scholar · View at Scopus
- S. M. Suter, “The routinization of prenatal testing,” American Journal of Law and Medicine, vol. 28, no. 2-3, pp. 233–270, 2002. View at Google Scholar · View at Scopus
- B. Reid, M. Sinclair, O. Barr, F. Dobbs, and G. Crealey, “A meta-synthesis of pregnant women's decision-making processes with regard to antenatal screening for Down syndrome,” Social Science & Medicine, vol. 69, no. 11, pp. 1561–1573, 2009. View at Publisher · View at Google Scholar · View at Scopus
- E. A. Gates, “Communicating risk in prenatal genetic testing,” Journal of Midwifery and Women's Health, vol. 49, no. 3, pp. 220–227, 2004. View at Publisher · View at Google Scholar · View at Scopus
- J. M. Green, J. Hewison, H. L. Bekker, L. D. Bryant, and H. S. Cuckle, “Psychosocial aspects of genetic screening of pregnant women and newborns: a systematic review,” Health Technology Assessment, vol. 8, no. 33, 2004. View at Google Scholar · View at Scopus
- R. M. Farrell, N. Dolgin, S. A. Flocke, V. Winbush, M. B. Mercer, and C. Simon, “Risk and uncertainty: shifting decision making for aneuploidy screening to the first trimester of pregnancy,” Genetics in Medicine, vol. 13, no. 5, pp. 429–436, 2011. View at Publisher · View at Google Scholar · View at Scopus
- H. Bekker, J. G. Thornton, C. M. Airey et al., “Informed decision making: an annotated bibliography and systematic review,” Health Technology Assessment, vol. 3, no. 1, pp. 1–156, 1999. View at Google Scholar · View at Scopus
- M. Schoonen, B. van der Zee, H. Wildschut et al., “Informing on prenatal screening for Down syndrome prior to conception. An empirical and ethical perspective,” American Journal of Medical Genetics, Part A, vol. 158, no. 3, pp. 485–497, 2012. View at Publisher · View at Google Scholar · View at Scopus
- L. M. Hunt, K. B. De Voogd, and H. Castañeda, “The routine and the traumatic in prenatal genetic diagnosis: does clinical information inform patient decision-making?” Patient Education and Counseling, vol. 56, no. 3, pp. 302–312, 2005. View at Publisher · View at Google Scholar · View at Scopus
- P. J. McKenzie, “Informing choice: the organization of institutional interaction in clinical midwifery care,” Library and Information Science Research, vol. 31, no. 3, pp. 163–173, 2009. View at Publisher · View at Google Scholar · View at Scopus
- K. Mann, C. Van Der Vleuten, K. Eva et al., “Tensions in informed self-assessment: how the desire for feedback and reticence to collect and use it can conflict,” Academic Medicine, vol. 86, no. 9, pp. 1120–1127, 2011. View at Publisher · View at Google Scholar · View at Scopus
- J. Sargeant, H. Armson, B. Chesluk et al., “The processes and dimensions of informed self-assessment: a conceptual model,” Academic Medicine, vol. 85, no. 7, pp. 1212–1220, 2010. View at Publisher · View at Google Scholar
- E. Murray, C. Charles, and A. Gafni, “Shared decision-making in primary care: Tailoring the Charles et al. model to fit the context of general practice,” Patient Education and Counseling, vol. 62, no. 2, pp. 205–211, 2006. View at Publisher · View at Google Scholar · View at Scopus
- G. Elwyn, J. Gray, and A. Clarke, “Shared decision making and non-directiveness in genetic counselling,” Journal of Medical Genetics, vol. 37, no. 2, pp. 135–138, 2000. View at Publisher · View at Google Scholar · View at Scopus
- M. Woods, Parental resistance: mobile and transitory discourses: a discursive analysis of parental resistance towards medical treatment for a seriously ill child (a thesis presented in fulfilment of the requirements for the degree of Doctor of Philosophy in Nursing) [Ph.D. thesis], Massey University, Palmerston North, New Zealand, 2007.
- D. A. Noseworthy, S. R. Phibbs, and C. A. Benn, “Towards a relational model of decision-making in midwifery care,” Midwifery, vol. 29, no. 7, pp. e42–e48, 2013. View at Publisher · View at Google Scholar · View at Scopus
- G. Lewando-Hundt, J. M. Green, J. Sandall, J. Hirst, S. Ahmed, and J. Hewison, “Navigating the troubled water of prenatal testing decisions,” in New Technologies in Health Care, A. Webster, Ed., pp. 25–33, Palgrave Macmillan, Basingstoke, UK, 2006. View at Google Scholar
- M. Paasche-Orlow, “Caring for patients with limited health literacy: a 76-year-old man with multiple medical problems,” Journal of the American Medical Association, vol. 306, no. 10, pp. 1122–1129, 2011. View at Publisher · View at Google Scholar · View at Scopus