How do prospective parents who decline prenatal screening account for their decision? A qualitative study

doi:10.1016/j.socscimed.2009.05.004

Social Science & Medicine

Volume 69, Issue 2, July 2009, Pages 274-277

https://doi.org/10.1016/j.socscimed.2009.05.004 Get rights and content

Abstract

Despite the aim of nuchal translucency screening to enhance reproductive choices among prospective parents, research on the experience of those who choose to decline this screening has been fairly limited. The objective of this study is to gain an understanding of how parents who decline screening account for their decision in a setting where screening for Down's syndrome in early pregnancy is the norm. The majority of research on prenatal screening choices has been conducted retrospectively; there has been very little research that has explored decision making on a prospective basis and that has included both parents.

In order to study this question, a purposive sample of ten couples who had decided to decline screening was recruited from four health care centres in Iceland. Data were gathered in semi-structured interviews conducted with each participant twice during the pregnancy (at 7–12 weeks pregnant and at 12–24 weeks pregnant), for a total of 40 interviews. We find that the decision to decline screening is largely determined by what prospective parents bring with them to the pregnancy, i.e., their personal philosophy of Down's syndrome and the high value they place on maintaining the complexity of life. The test is also considered unreliable by some of the participants. These findings have implications for those who are involved in formulating and providing antenatal screening policies and practices.

Section snippets

Method

This paper is based on data from an extensive qualitative study, where the overall aim was to explore the experience of decision making to undergo nuchal translucency screening among both couples who accept and couples who decline screening (Gottfredsdóttir et al., in press). To explore how decisions around screening were formulated and reflected upon, the data collection was designed to gain access to the prospective parents as early in the pregnancy as was possible. Twenty couples were

Results

All the participants spoke openly about the topics raised in both interviews and did not decline to answer any of the questions. Therefore, despite the relatively small sample size, the data collected were rich in content and the findings raise issues that have gained limited attention in previous studies. In the second interview, the decision remained strong and almost all participants emphasized that this was a decision that they would opt for again. Half of the couples said that the

Discussion

This study explores how people who decline screening experience their choice and how they account for their decision using a prospective design. We find that each individual refusal of screening exhibits a complex interplay between personal views, values and the social context. Thus, the findings reflect the relationship between the participants' experiences of disability, knowledge and understanding of risk involved in undergoing screening and the context of antenatal care.

Although the

Conclusions

The importance of this study lies in the issues raised by participants, and as such, it increases our knowledge on the views and experience of parents who decline screening. Realistic expectations and adequate knowledge of NT screening is fundamental for the individual parent who is confronted with the offer of screening, but if that parent's values, beliefs and experiences are unknown to professionals, they cannot fulfill their role as providers of informed antenatal care. If screening is to

References (22)

L.D. Bryant et al.
Understanding of Down's syndrome: a Q methodological investigation
Social Science & Medicine
(2006)
E. Garcia et al.
The impact of ethical beliefs on decisions about prenatal screening tests: searching for justification
Social Science & Medicine
(2008)
B. Heyman et al.
On being at higher risk: a qualitative study of prenatal screening for chromosomal anomalies
Social Science & Medicine
(2006)
S. Markens et al.
Because of the risks: how US pregnant women account for refusing prenatal screening
Social Science & Medicine
(1999)
P. Santalahti et al.
Women's decision making in prenatal screening
Social Science & Medicine
(1998)
C. Williams et al.
‘Women as ‘moral pioneers’?: experiences of first trimester nuchal translucency screening
Social Science & Medicine
(2005)
C.H. Browner et al.
The production of authoritative knowledge in American prenatal care
Medical Anthropology Quarterly
(1996)
L. Bryant et al.
Attitudes towards prenatal diagnosis and termination in women who have a sibling with Down's syndrome
Journal of Reproductive and Infant Psychology
(2005)
S. Di Gregorio
Teaching grounded theory with QSR NVivo
Qualitative Research Journal
(2003)
R.T. Geirsson et al.
Skýrsla frá faedingaskráningunni fyrir árid 2005
(2006)

Gottfredsdóttir, H., Sandall, J., & Björnsdóttir, K. This is what you do when you are pregnant: a qualitative study on...

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in the UK, midwives are facing a policy-drive to include men in antenatal care, and men will soon receive paternity leave to enable their involvement. As a result, more men will be able to attend screening, support women and participate in decision-making. We therefore conducted a timely exploration of what being involved means for men and what they want from antenatal screening and midwives.
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^☆: The authors wish to thank the prospective parents who participated in this study and the midwives who helped with collection of participants. This study was funded by the Icelandic Science Foundation and the Association of Midwives in Iceland, and supported by a Visiting Research Fellowship in the Florence Nightingale School of Nursing and Midwifery, Kings College.

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Short reportHow do prospective parents who decline prenatal screening account for their decision? A qualitative study☆

Abstract

Section snippets

Method

Results

Discussion

Conclusions

Social Science & Medicine

Social Science & Medicine

Social Science & Medicine

Social Science & Medicine

Social Science & Medicine

Social Science & Medicine

The production of authoritative knowledge in American prenatal care

Medical Anthropology Quarterly

Attitudes towards prenatal diagnosis and termination in women who have a sibling with Down's syndrome

Journal of Reproductive and Infant Psychology

Teaching grounded theory with QSR NVivo

Qualitative Research Journal

Skýrsla frá faedingaskráningunni fyrir árid 2005

Short report
How do prospective parents who decline prenatal screening account for their decision? A qualitative study☆