Decision‐making process of prenatal screening described by pregnant women and their partners

Abstract

Background

Pregnant women are often faced with having to decide about prenatal screening for Down's syndrome. However, the decision to participate in or refrain from prenatal screening can be seen as an important decision not only for the pregnant woman but also for both the partners.

Objective

The aim of this study was to explore the couples' processes of decision making about prenatal screening.

Methods

A total of 37 semi‐structured interviews conducted at two time points were analysed using the interpretive description.

Setting

The study was carried out in Maternal health‐care centres, Örebro County Council, Sweden.

Participants

Fifteen couples of different ages and with different experiences of pregnancy and childbirth were interviewed.

Results

Three different patterns of decision making were identified. For the couples in ‘The open and communicative decision‐making process’, the process was straightforward and rational, and the couples discussed the decision with each other. ‘The closed and personal decision‐making process’ showed an immediate and non‐communicative decision making where the couples decided each for themselves. The couples showing ‘The searching and communicative decision‐making process’ followed an arduous road in deciding whether to participate or not in prenatal screening and how to cope with the result.

Conclusions

The decision‐making process was for some couples a fairly straightforward decision, while for others it was a more complex process that required a great deal of consideration.

Introduction

In most European countries, prenatal screening for Down's syndrome is routinely offered to pregnant women in the first trimester.1 Women's reasons for accepting screening have been reported to include a desire to gain more knowledge about the foetus, as a basis for deciding about further diagnostic testing and having the opportunity to decide about having a child with Down's syndrome or not. The main reasons for declining the screening have been given as unfavourable characteristics of the screening test, the perception that the test is not necessary, increased anxiety, adverse characteristics of the invasive test and opposition to abortion.2 Other women describe complex feelings regarding the risk assessment.3

The decision making about prenatal screening has been described as easy by some women who viewed the decision as a mere formality and a confirmation that all is well.4 Women have also described decision making on screening as a process in which they considered their own moral values and beliefs in relation to aspects of the screening process.5 A similar diversity in ethical views has been shown among those accepting and those declining the screening. Once the decision was made, the women used normative moral principles to justify and support the decision.6

The decision to participate in or refrain from prenatal screening can be seen as an important decision not only for the pregnant woman but for her partner as well. An earlier study from our research group showed that partners perceive themselves to be just as important in the decision making as the women.7 In several studies, partners expressed the view that the leading role in the decision making belongs to the women and the partner's role is to support the woman. In those cases, the decision was made by the women, and hardly discussed by the couple.8, 9, 10 However, another study showed joint decision making in which only occasionally the decision was made by the woman alone.11

As the first county council in Sweden to provide screening, Örebro County Council in November 2008 introduced the combined test for all pregnant women as a voluntary service, free of charge. The combined test detects trisomy 21, Down's syndrome and trisomy 13 + 18 by combining maternal age with information from the ultrasound scan based on the nuchal translucency of the foetus and measurements of serum‐screening markers from the woman's blood. It is performed in early pregnancy and the individual risk for carrying a foetus with these chromosomal aberrations is calculated. About 5% of participants have a high‐risk result and are then offered invasive testing for diagnosis.12, 13, 14

For pregnant women and their partners in Örebro County Council who want information about prenatal screening, a voluntary, separate information session with extended verbal information is provided by specially trained midwives. The information session explains about the available methods and what can be further learned from these methods.

An earlier study by Wätterbjörk et al.7 reported that couples wanted to know how other couples in the same situation reasoned and made up their minds about prenatal screening, but lacked examples of other couples' decision‐making processes. A deeper understanding of how couples handle the information from the extended information session in making the decision to participate or not in the test should give important knowledge for how to provide couples with adequate information and support.

It is also important to gain more knowledge about how a population‐based prenatal screening programme, as opposed to a programme addressing only risk groups, is received, as such a programme may evoke very different reactions compared with a situation where the test is actively sought after. Therefore, the aim of the present study was to explore couples' decision making, that is, how the pregnant woman and her partner, who had taken part in a population‐based information programme, described the process of their decision making about prenatal screening.

Methods

Participants

Pregnant women and their partners who participated in an information session at any of the four information centres in the county council area in October – November 2009 were invited to take part in the study. To achieve maximum variation sampling,15 the recruitment was stratified based on age groups (≤25 years, 26–34 years and ≥35 years), parity (nulli‐ vs. multipara) and different geographic areas within the county. Immediately after the information session, the midwives provided the participants with verbal and written information about the study. The ten midwives at the information centres were asked to recruit at least two couples each, and in total 23 couples were invited. Nineteen couples agreed to be contacted by the researchers, and of those, 15 finally agreed to participate. The reason for declining was lack of time in all cases.

Data collection

The interviews were conducted on two separate occasions. The first interview took place between 3 days and 3 weeks after the information session. The second interview was conducted 3–5 weeks after the ultrasound scan, in pregnancy week 18 (Table 1).

Table 1.

Time schedule for data collection and prenatal screening

Pregnancy week
9–13	10–13	11–14	16–20	20–23
The couples took part in the information session and accepted to participate in the study	The first interview was conducted	CUB screening for some of the couples	Routine ultrasound scan for all couples	The second interview was conducted

The intention was to perform the first interview in three parts: by conducting separate interviews with the pregnant woman and her partner, to capture their individual experiences and another interview with the couple together for a mutual discussion. However, this was not possible in nine cases because of shortage of time on the part of the couple. In one case, the interviews with the partner separately and the couple together were cancelled owing to miscarriage, but the initial interview with the woman has been included in the study.

After the first interview, the couples were asked if they agreed to be contacted after the ultrasound scan for a follow‐up interview. Twelve couples consented, while two couples declined because of lack of time. One of the couples who had consented at first declined just before the interview without giving a reason, which left behind eleven couples. The second interview was intended to be conducted with the couple together, but this was not possible in five cases because of shortage of time on the part of the partner.

Altogether, the study incorporated 37 interviews: 15 individual interviews with the pregnant women, six individual interviews with partners (all male) and 16 with couples together. All interviews were included in the analysis (Table 2).

Table 2.

Number of interviews, and characteristics of women and their partners participating in the interviews

Couple number	The first interview	The second interview	Number of children, woman/partner	Age (yrs), woman/partner	Educational level, woman/partner
1	Woman/Partner/Couple	Couple	2/2	26/30	Secondary school/Secondary school
2	Woman/Partner/Couple	Couple	2/2	29/34	University/Secondary school
3	Couple	Woman	0/0	28/35	University/Secondary school
4	Couple	Couple	4/4	35/45	Secondary school/Secondary school
5	Couple	Woman	2/2	32/33	Secondary school/Secondary school
6	Woman		1	29	University
7	Woman	Woman	0	30	University
8	Woman		0	28	University
9	Woman/Partner/Couple	Couple	0/0	29/29	University/University
10	Woman/Partner	Woman	0/0	20/22	Secondary school/Secondary school
11	Woman/Partner/Couple	Woman	0/0	32/36	University/University
12	Woman/Partner/Couple	Couple	0/0	21/24	Secondary school/Secondary school
13	Couple		0/0	27/27	University/University
14	Couple	Couple	0/0	36/29	University/University
15	Woman		1	38	University

The interviews were semi‐structured and an interview guide was used.16 The question areas during the first interview covered the participants' perceptions of the decision‐making process with regard to the combined test and intentions to participate in or decline the screening. The second interview focused on how they perceived their decision‐making process in retrospect, as well as their experiences of the combined test. All interviews were conducted either at the couple's home or at the interviewer's workplace at a time chosen by the participants. All the interviews were conducted by the first author and were audio‐recorded.

Ethical considerations

We considered the risk that the couples would perceive the interviews as intrusive questioning or as causing mental stress, but judged it to be small. The main point of the interviews was that the couples would be free to talk about their views of the decision rather than being questioned about it, and this was also considered during the interviews. Also, the interviews took place at a time separate from the information session, and the couples had an opportunity to consider whether to participate in the interviews or not. The interviewer had extensive experience in discussing and dealing with sensitive issues and would have been able to help arrange further support if this had been necessary, but it did not appear necessary in any of the cases. All women had ongoing contact with the maternal health‐care programme, which could also answer any questions that arose. The study was approved by the Regional Ethical Review Board, Uppsala, Sweden.

Data analysis

For the analysis, we used the interpretive description, an inductive approach to obtaining a clinically relevant and useful understanding of how people experience issues related to health processes.17

The data analysis was carried out primarily by the first author, but preliminary findings and the whole analysis process were repeatedly discussed and thus validated with the co‐authors. The analysis process started with the first author transcribing the interviews verbatim (step 1). The interview texts were then read through several times to gain a sense of the whole (step 2). As the next step (step 3), text units, an entire phrase, a specific statement or even single words related to the aim were marked. Headings were written down that described the aspects of the content. Because the aim was to obtain the couples' descriptions of their decision‐making processes, and because not all interviews contained the partners' points of view, we took care to ensure that the analysis did not include statements from the women about their partners' opinions, but rather used only the women's versions of their mutual conversations. All statements were analysed together, without being divided into women's or partners' points of view. The analysis process was guided by an analytical question related to the aim, namely: ‘What does this reveal about the decision‐making process in this?’ In the next step (step 4), related headings were broadly grouped together. Possible interpretations, subthemes were written down and were checked against the text.

Three different themes were formulated, which seemed necessary for the decision‐making process about the combined test: Why?, Reasons for decision; What?, Options for decision; and How?, Paths for decision making. Variations in each theme are categorized into nine subthemes.

In the final step (step 5), all interviews were analysed a second time using all the interviews together for each couple, and an interpretation was made concerning how the different couples' decision‐making processes related to the different themes and subthemes (Table 3).

Table 3.

Themes and subthemes developed into patterns

Findings

Out of the analysis, three different patterns were identified relating to couples' decision‐making processes about participating or not in the combined test.

Each of the three patterns is illustrated with a description of a case of a typical couple, using fictitious names. Quotations in the Results section were cautiously transcribed from spoken to written language and translated from Swedish to English by a professional translator. To clarify the interpretations, the different patterns are summarized with regard to what characterizes each pattern and presented after the different case descriptions below.

The open and communicative decision‐making process

Anna, aged 23, and her partner Benny, aged 22, were expecting their first child. Prenatal screening was new to the couple, although they knew about the ultrasound scan. Anna and Benny had each made their own separate decision to participate in the combined test, following the information session, but they had later discussed the decision back and forth with each other. Benny said, ‘I want to know as much as possible so we can prepare.’ If it were necessary, they were also sure about having the invasive test. However, they had different ideas about what they would decide to do if the test were to reveal a trisomy. Anna said, ‘But then we have an answer at least, then we can decide based on that.’ They were both aware that they would have to discuss the decision if they ended up in this situation.

At the second interview they were very pleased with their decision to participate in the combined test. They were surprised and relieved that the combined test was such an ‘easy’ and quick examination, and afterwards they were satisfied with their decision.

Characteristics of the open and communicative decision‐making process

Most of the couples in this pattern had made a reflected decision to accept or decline the combined test. They had formulated their own reasons for participating or not. Couples who declined the offer of the test described the decision as ‘easy’ to make and as well thought through. They indicated that they were avoiding anxiety by declining the test. Other motives were that the couples did not want to know anything about the expected child ahead of time and that they would welcome any child.

Arguments for accepting the combined test were that the test could reduce couples' concerns about the pregnancy and give them either an opportunity to prepare themselves for a child with trisomy or a chance to decide on an abortion. Concern about the effects on their other children, if the unborn sibling were disabled, was a further reason for participating in the combined test.

Couples who accepted the combined test had also made a decision about the whole procedure; they had decided what they would do if they received a high‐risk assessment from the combined test, and whether they would carry on with the invasive test. Also, in case this invasive test showed a trisomy, the couples had decided whether they would have an abortion or prepare for a life with the child, or like Anna and Benny, would be prepared to make the decision. For decliners of the combined test, the decision was also for the whole procedure, as they did not want to make further decisions.

Most of the couples had had an on‐going discussion with each other until they reached a joint decision. For some of the couples, the discussion was about different views on whether or not to participate in the combined test, while others needed to find their own mutual reason for the test. A few couples had also sought opinions from their parents and siblings and then considered different options, which helped them make their decision.

All couples, both acceptors and decliners, showing this pattern were pleased with their decision at the second interview. None had received a high‐risk test result.

The closed and personal decision‐making process

Cathrine, aged 32, and her partner David, aged 33, were expecting their third child. They had had routine ultrasound scans taken at their previous pregnancies but they had no other experience of prenatal screening. At the information session, they realized what the combined test was about and each of them instantly made an individual decision to participate in the screening. They did not discuss their decision. David said, ‘We didn't even think about it. It felt obvious to do.’ Cathrine and David did not mention anything about further decisions in the event that the combined test showed a high risk for trisomies or whether they had discussed this possibility. Talking about their reason for participating in the screening, Cathrine said, ‘It's good to get all the information you can get.’

Cathrine and David were pleased and content with their decision at the first interview, and they expressed the same opinion at the second interview. Cathrine described the examination as a strong emotional experience enabling them to see the foetus in early pregnancy.

Characteristics of the closed and personal decision‐making process

A few couples showed this pattern, and none of them declined the test. Most of them focused on only one argument for participating and made their decision at or right after the information session. Their argument was more about having the opportunity to participate in the screening rather than an expressed willingness to participate.

The couples who adopted this decision‐making pattern related their decision only to the combined test. None of these couples mentioned that the combined test might require further decisions, and no couple in this pattern hesitated to make the decision. Also, they did not mention any consequences of the test or the risk assessments. The couples reasoned that the test did not involve any physical risks for the woman or the foetus and that there was therefore not much to discuss. One couple thought of the test solely as an opportunity to have an early ultrasound scan taken, but were not interested in the risk assessment and would not pay any attention to that.

Couples in this decision‐making pattern did not discuss the issue with each other or with anyone else before reaching their decision. The decision was immediate and they felt no need to discuss it. This process was seen both in couples with a unanimous opinion and in couples where one partner had powerful views about what was the right decision.

At the second interview, couples described different experiences of the combined test, but no couple had received a high‐risk test result. All couples in this group had participated in the test, and most of them thought that there was ‘too much fuss’ being made about the screening. One woman, however, regretted having participated in the test, because they had received different risk figures for the three trisomies, and this was not what she had expected. All the figures were well within the limits for low risk, and although she understood this, it caused her great anxiety. She felt reassured only when the routine ultrasound scan in pregnancy week 18 showed a normal result.

The searching and communicative decision‐making process

Eva, aged 32, and her partner Fredrik, aged 36, were expecting their first child. Their understanding of prenatal screening or prenatal diagnosis was that it was an invasive test for pregnant women over 35 years of age. Because Eva was just 32 years old, they did not expect prenatal screening to be an option for them. Only recently aware of the pregnancy, they found it hard to immediately question it. At the first interview, they were struggling, as they wanted to make all decisions in advance. Eva said, ‘It's an uncertainty that you don't know what kind of answer you'll get. You want to decide everything in advance.’ Because they could not make all these decisions and resisted coming to any decision, they were locked in the decision‐making process.

By the time the second interview took place, Eva and Fredrik had had the test. They had been able to make a decision, because they had talked to many people like family, friends and work colleagues. A friend had asked if they would have to decide about the whole process in advance. This was the question that made it possible for them to find a way out of the situation. Fredrik said, ‘It became a good reflection of how you could think – let's do this test, and then we'll see.’ They were very pleased with their decision and they found the ultrasound scan at the combined test to be a precious experience and worth all the worries.

Characteristics of the searching and communicative decision‐making process

The few couples exhibiting this decision‐making pattern were all in their thirties and expecting their first child. They had had to give the decision much thought and were very ambivalent about it, as they could not find a distinct argument for or against participating in the combined test. They also questioned the test as a method. They found it hard to conceive a reason for testing, if the procedure would not even give an exact answer. These couples also found it confusing that the offer of prenatal screening was different in different counties, with different age limits and even different limits in risk assessment for low or high risk.

It was hard for these couples to determine what the decision was all about. One couple found no other argument for participating than that further on in the pregnancy they might regret not having participated. After consideration and discussion between themselves, they reached the decision to only participate in the combined test. They hoped for a low‐risk assessment and postponed the thought of any hard decisions further on, although they were aware that these might become necessary.

These couples discussed the matter in depth with each other and tried to communicate and discuss with others the decision about participating in the test. They discussed the issue with family and friends, and sometimes, they encountered different opinions. This gave them new perspectives and new ideas for how to think about the decision, and it helped them to reach a decision. Other couples regretted not having the opportunity to discuss the issue with someone else, and they wanted the opportunity to have further contact with the midwife from the information session. Many questions had occurred to them after the information session. They were not technical questions about the combined test or risk assessments; rather, they concerned how other people and couples debated these matters. These couples experienced themselves as locked in their own thoughts and wanted to find new perspectives. One couple also interpreted the offer of the combined test as a decree; in other words, they thought that the county council wanted people to participate.

Some couples adopting this pattern struggled with ethical considerations as to ‘who was to decide in this matter’ and referred to this as ‘a decision for a higher power’. Others thought it was a complicated decision and referred to it as something ‘for medical professionals to decide’ and not a decision ‘for an ignorant public’.

At the second interview, all of the couples showing this pattern were pleased and content with their decisions. None had received a high‐risk test result. One woman commented that although she did not regret her decision to participate in the combined test, she did not think chromosomal tests were ‘ethically right’ in principle.

Discussion

The sample in this study was recruited from among couples who had attended the same information programme, and the study's aim was to gain an understanding of the couples' decision‐making processes regarding the combined test. The result showed three different patterns in these couples' decision‐making processes and how the couples had used the information.

The open and communicative decision‐making process was the most common pattern shown by the interviewees. The couples described the process as one of defining their own reasons for having the combined test or not and of determining what the decision was about. In this they had considered their whole life situation, and it was often an emotional, although rational, process. This type of decision making could be seen as related to the expected utility theory (EU).18 According to the EU theory, individuals choose the behaviour or option with the highest maximized expected utility. For these couples in this situation, it could be, ‘What is the best outcome for me and/or our family of participating in or declining the combined test?’

The pattern of the closed and personal decision‐making process was adopted by couples who made a quick individual decision, which they did not want to communicate. This way of acting could be related to the theory of planned behaviour.19 Central to the construction of this theory are attitudes. According to this theory, an individual's behaviour is predicted by three factors, namely, whether the individual's evaluation is positive, whether the individual believes that important others think they should perform it and whether the individual perceives it as being under their control.19 The couples showing this pattern were favourably disposed towards the combined test. They did not know how others thought about it, because they did not want to discuss the issue with each other or with others, possibly as a strategy to avoid confronting different opinions about the decision. This way of acting has also been reported in a British study in which couples saw themselves as a unit with a shared experience of pregnancy and parenthood. They felt anxious that if other people had different views, knowing about these would make decision making too difficult and influence their own decisions.11

In the pattern of the searching and communicative decision‐making process, emotions were central attributes. These couples processed at an emotional level all the facts they received at the information session. This style of decision making could connect to ‘the risk‐as‐feelings hypothesis’ described by Loewenstein et al.20 According to this hypothesis, the couples could make use of their emotions (worries, fear and anxiety) and emotional responses as an important factor in the decision‐making process.20

Other decision‐making theories available could possibly also contribute to the understanding of the identified patterns, but we find that the three theories described give a thorough explanation of the patterns. Our findings do not suggest that one of these theories could account for all three patterns.

The partners' narratives and the women's descriptions of the couples' discussions revealed that the partners participated in the decision making about the combined test. The partners' role in the decision making was therefore an active role, and this could be clearly seen in all patterns. In the closed and personal decision‐making process, the couple did not communicate their individual decisions to each other, but the partners saw themselves to be equally responsible for the decision. This is different from what has been shown in other contexts. In an Icelandic study and in a British study, the partners claimed that it was the woman who made the decision,9, 21 with the woman also portrayed as the provider of information about prenatal screening to the partner.9 In a Dutch study, most of the male partners left the decision to the woman and then supported her final choice. However, the women stated that they would have preferred the decision to be made in partnership and by agreement.22 Another British study exploring gender roles in prenatal screening reported that UK legislation, workplace norms and health professionals are barriers to partners being involved in the decision making on prenatal screening.23

Autonomy has traditionally been discussed as a state that should be protected from others, meaning that the autonomy of an individual must be protected from being violated by other people. This means that there is a moral obligation to respect autonomy but not necessarily to promote it. This idea of protection is manifested especially in medical and health‐care ethics in the idea of informed consent.24 A screening programme could promote a person's autonomous decision. But a side‐effect of screening might be that the more benefits the screening offers the more pressure there is to participate, and the more problematic it might be from the point of view of autonomy.24 This has been shown in an Icelandic study where the offer of screening was a routine and allowed no time for an autonomous decision.25 This pressure was also felt by some of the couples in our study. They were struggling to reach a decision and were not prepared for the question, because they did not see themselves as being in a high‐risk group. Overall, the couples were content with their decisions, even though it was a difficult decision for some. It must be underlined that all couples in our study, as would be expected, had a low risk. Had some couples found themselves in a high‐risk scenario or with abnormal findings at the ultrasound scan, their experiences would presumably have been different.

In this study, the chosen method was to use qualitative interviews. Broad opening questions encouraged the participants to express their own perceptions and experiences in the interviews. The interviews also gave them an opportunity to present their own interpretations of the subject. The intention was to perform interviews with the woman and the partner separately to record their individual opinions and with the couple for a mutual discussion. This was not feasible in all cases. However, during the couple interviews, the couples discussed with each other and enhanced the dialogue, making these interviews the most abundant source of data. Even the interviews with the women provided rich information about the couples' decision‐making process, but of course, from the woman's perspectives. An open dialogue between the researchers was created to establish reliability, and the authors discussed the interpretation of the data to ensure that their judgements about similarities and differences of content were consistent.

This study has limitations, which should be mentioned. The samples were fairly homogeneous, comprising only native Swedes or long‐time residents in Sweden. More than half of the participants were university educated compared with 35% of university‐educated individuals in the general population. However, the participants exemplify differences in age, previous pregnancies and areas of residence within the county. The study included a few participants who declined the offer of the combined test. Perhaps, we might have identified more patterns if more decliners had participated. Because 95% of those who underwent the combined test were calculated to have a low‐risk, we did not expect many high‐risk results, and in fact, none of the participants went to have an invasive diagnostic test, a high‐risk result, an abnormality or a termination. If they had, it might have influenced their view of their decision. The sample in this study is also drawn only from those who had participated in the extended information session, and the result cannot stand for those who had refrained from additional information. Further research is needed concerning the decision‐making processes involved in choosing not to attend the extended information session and then participating or not in prenatal screening.

A further limitation may be that the couples were engaged in a decision‐making process at the time of the first interview, which may have affected the depth of interviewing and the follow‐up questions about decision making. The interviewer may have felt constrained by this state and may not have explored the answers fully enough out of fear of influencing the couples' decision‐making processes. This may have been the case especially with couples adopting the pattern of the closed and personal decision‐making process, who exhibited a fairly superficial decision‐making process. However, at the second interview the couples gave the same description of the decision‐making process as at the first interview. Our findings are also strengthened by a previous study that described the decision about prenatal screening as easy and a mere formality.4

Conclusion

The results show three different patterns in couples' decision‐making processes concerning whether to participate or not in prenatal screening. While for some couples, the process was a fairly straightforward decision, for others it was a more complex process that required a great deal of consideration. The findings suggest that the information session should be more personalized. This would require a professional with good interpersonal skills to respond to different individuals. Also, it would require more opportunities for discussion and follow‐up. The results provide different examples, which could be used by providers in clinical practice for guiding couples in decision making about prenatal screening.

Conflict of interest

The authors wish to declare that there is no conflict of interest.