The women interviewed were both nulliparous and parous, had diverse sociodemographic backgrounds and were between 25 and 36 years old. Their educational level ranged from basic schooling to university education (Table 1). None had had previous PND, except for first and/or second trimester ultrasound in previous pregnancies.

Table 1 Background data of the 24 participants

Two main themes emerged, with both individual and external factors influencing the decision-making process regarding PND (Fig. 1). The theme ‘Individual factors – The women’s experiences, perceptions and values’ had three categories (‘Attitudes towards anomalies’, ‘Worry and need for reassurance’, ‘Self-perceived risk’). The theme ‘External factors – The women’s impression of the test and others’ views’ had two categories (‘Test characteristics’, Influence from others’).

Fig. 1

Category system describing the individual and external factors affecting the decision-making process

Theme 1: Individual factors – the women’s experiences, perceptions and valuesAttitudes towards anomalies

Some women expressed that they would want to test for as much as possible with no distinction between conditions. They wanted to gain as much information as possible about their fetus, but without posing any risks to the pregnancy. For others, their perception of CAs and other conditions played a substantial role in the decision-making process. What conditions a test can detect and the perceived severity of these conditions, influenced their decision-making process. What was considered a severe condition that motivated testing varied. Insufficient information (for women who had had their first visit with their midwife) and a lack of knowledge about conditions screened for made it harder for some to make decisions about testing.

“I personally feel that we’ve not received a lot of information and I think this is why it’s been hard for us, or rather hard to decide what we should do [….] say it’s a test to find chromosomal disorders, well what would that mean? How does such a child function, or what implications does this kind of disorder have?” – Woman #8, age 27, nulliparous.

Women’s assessment of how the condition will affect the child and the family was often a major factor when discussing how they felt about having PND for different conditions. The expected quality of life for the child was an essential factor in women’s decision-making process.

“If the child were to be seriously ill, then what kind of life is one giving the child?” – Woman #17, age 32, parous.

Conditions that would not cause suffering for the child and that could be consistent with a good quality of life, were often seen as more manageable and therefore not necessary to test for. Women also considered the possible negative effect on siblings (such as less time with parents) if the child had disabilities or health problems. Nulliparous women not interested in PND in their first ongoing pregnancy, admitted that they might feel differently in a subsequent pregnancy because of the effect a sibling with an anomaly might have on their first child. For less severe conditions, some women reasoned that siblings would adjust and the family would adapt.

For some women, the effect a child with an anomaly might have on their work and social life was an important factor when deciding about PND. They were worried that such a child would prevent them from living a full and happy life.

“My job is really important to me. I’ve studied for a long time and put a whole lot of time into it. I love my job [….] both me and my partner live very active lives where we still have a lot of freedom, having children hasn’t changed this very much [….] should it become limiting for me, maybe I wouldn’t be, I don’t know how happy I would be anymore. I don’t think for a second that I would love this child less. But if I could choose to not live the rest of my life with a severely handicapped child, I would do it.” - Woman #2, age 33, parous.

The prospect of a child who would not grow up and become independent worried some women. They were not sure they could cope with that lifelong responsibility, which could motivate both having PND and considering TOP if an anomaly was diagnosed.

Previous experience of anomalies or children with disabilities influenced the perception of what life with an affected child could be like. For some women, personal experience among family or friends made them more inclined to have PND, while others felt they could cope with the situation and that it would be worth the love the child would bring.

“Among our relatives, we have a child with a chromosomal disorder and now we can’t imagine a life without him, so I think it would be the same here. In other words, you would adjust and just take it as it is. Love your child, make the best of it.” – Woman #11, age 35, parous.

Women with previous experience from work with disabled children, reflected on how the severity of the condition affected quality of life and the need for assistance in daily life. One woman working as a personal assistant to children with disabilities, described a sense of security, knowing that the social welfare system in Sweden would provide help if needed. Yet she also acknowledged that her insight into the struggles of daily life could cause sadness if having a disabled child herself.

Women who would not consider or were undecided about undergoing a TOP in case of an anomaly, could still see a value in PND to be able to prepare for the birth of a child with special needs or health problems. Knowledge about the condition before birth could give them a chance to obtain information to better prepare for a life with an affected child.

“It’s still probably good to know some things, because then one can prepare in a different way for when the baby arrives.” – Woman #4, age 27, nulliparous.

Worry and need for reassurance

Women expressed a need for confirmation of the pregnancy and the health of the baby. Some wanted to undergo a CUB test because they wanted an early ultrasound and see the fetus. To wait for the second-trimester ultrasound, which is offered to all pregnant woman in Sweden, felt too long. Women described how it was hard for their partner to feel involved when the pregnancy was not yet visible. An ultrasound where both the woman and her partner could see the fetus made the pregnancy more real and was reassuring if fetal viability was confirmed, especially for women who had not yet felt pregnancy symptoms or fetal movements.

“And the other partner can be made more involved, and in terms of myself, maybe also really understanding, yes – there actually is a life in there, even if it feels kind of unreal, so it’s really hard to imagine.” - Woman #8, age 27, nulliparous.

Some women expressed that being able to get pregnant did not necessarily lead to a live-born baby, acknowledging that a lot could happen in 9 months. To rule out at least some conditions through PND could decrease worry and be reassuring. For women who had had a previous miscarriage, missed abortion or previous experience of fetal anomalies, a reassuring early ultrasound was especially important.

For some women, reasons for declining testing were feelings of uncertainty related to testing, such as that of a non-diagnostic probability assessment, e.g. the CUB test, and uncertainty about how to handle the results. Having a CUB test felt like risking unnecessary anxiety to some who had decided not to have an invasive test due to the associated risks. Waiting for the result was also mentioned as a period of increased anxiety.

“I’ve also read about people who have written about it, who’ve taken this CUB test and got really high-risk numbers and then have been really worried during the entire pregnancy and then a healthy baby arrived. It’s really good that it was a healthy baby, but all the worry during the pregnancy, I don’t think it’s worth it.” – Woman #11, age 35, parous.

Self-perceived risk

The self-perceived risk (i.e. the woman’s perception of her own risk) of expecting a fetus with a CA or other anomaly was described by pregnant women as a factor affecting their decision to undergo PND. Women with a low self-perceived risk did not feel a need for PND, while women with a higher self-perceived risk were more prone to undergo PND. Women were aware that with increasing age comes an increasing probability of CAs, and valuation of age was a major factor when assessing self-perceived risk. Older women, who in a previous pregnancy had not had PND, felt differently when now pregnant at their current age. Some also said they were now provided more extensive information about PND and experienced a different attitude from healthcare professionals. Younger women did not feel a need to undergo PND in their current pregnancy, but admitted that had they been older, they would have felt more inclined to have tests.

“I think that if I had been older, then I would probably have checked, because I know there are more risks then.” – Woman #17, age 32, parous.

Some women expressed that if everything looked normal at routine check-ups during pregnancy, they did not worry. Others described an impact of genetic or other predisposing factors causing an increased probability of a child with a CA, that if present in the parents, could motivate PND. The lifestyles of the pregnant women and partners were seen as possible predisposing factors, as well as their previous medical history and possible genetic conditions. Women with no family history of CAs were less inclined to have PND.

“Since I don’t have it in my own family, I don’t think I would – nah, then I would probably choose not to in fact, and not do the test. It’s different if there had been a lot way back in the family, maybe then it would have felt like I had to.” – Woman #3, age 35, parous.

The self-perceived risk was also affected by what healthcare professionals conveyed and the women’s perceptions of healthcare professionals’ assessment of risk. Women trusted healthcare professionals to let them know if there were reasons to worry or to have a test. The women thought the midwife made a professional assessment of the woman’s need to have PND. They expected to be given that information and if the midwife implied a higher probability, they would consider testing. To not be offered or recommended a test was perceived as a confirmation that the healthcare professional had made an assessment that their individual probability was low and testing not necessary.

“In that case, I think that the risk or chance is really small then and if there was anything that they thought should be checked out, well then they would have told me.” - Woman #22, age 33, nulliparous.

Theme 2: External factors – the women’s impression of the test and others’ views

While individual factors play an important role in the decision-making for many women, external factors such as test characteristics and influence from others can be just as influential.

Test characteristics

The characteristics of a test affect how women regard the test. Test-related risks were a major factor, many times a dealbreaker, for women when deciding about PND. There was a clear preference for risk-free tests. Decisions to undergo tests with no risks seemed less difficult to make. Women who were otherwise in favour of having PND were often hesitant to have a test with a risk of miscarriage.

“I don’t want to take any tests where there is a risk for miscarriage.” - Woman #20, age 26, nulliparous.

For some, this resulted in not having PND since they already had decided not to have a subsequent invasive test if a screening test indicated an increased probability. Others chose to have a screening test even though they were hesitant to have invasive tests associated with risks.

In general, women were less positive about tests that had a high percentage of false positive or false negative results. For some women the test accuracy was an important factor and they were not interested in tests with uncertain results. Not knowing if a result was correct could cause worry, especially if the test indicated an anomaly, thus making decisions concerning the pregnancy difficult. Women found the results from a probability assessment, such as CUB, difficult to interpret as they would not provide a clear answer. Those who would not consider an invasive test due to the increased risk of miscarriage, often found decision-making regarding screening more complicated than women open to having an invasive test to verify a diagnosis.

“You take the test to be sure, so if the test is not certain or not accurate to, well 99%, then there is probably no point in taking the test.” – Woman #6, age 27, nulliparous.

The timing of the test and waiting time for results were other characteristics affecting women’s decision-making. For some women, early testing and short waiting time was desired in an attempt to ease their worry. The time from test to result was mentioned as a period of increased anxiety with time to worry about what the results might show. Information and knowledge of the standard procedure, including the expected time from test to result was appreciated, as it helped relieve some of the worry.

“Just the waiting makes me so nervous and then it just means that you go around and worry and probably get a bunch of ideas in your head, everything that is wrong, even if like there maybe isn’t anything.” – Woman #18, age 28, nulliparous.

Both timing of the test and time from test to result was important for women who could consider TOP following a diagnosis of a fetal anomaly. To these women, the time limit for TOP without a special permission (18 gestational weeks) was one reason for wanting early testing. Another reason was their feeling that the longer the pregnancy advanced, the more real it would become, especially with awareness of fetal movements. Having had time to bond with the unborn child would make the decision to have a TOP emotionally harder, as would having told people about the pregnancy both privately and professionally.

Influence from others

Women mentioned influence from their partner, from healthcare professionals and how PND was offered, as factors affecting their decisions. Some women stressed that decisions regarding their bodies, including the pregnancy, were their own. However, most women wished to receive information regarding PND followed by time to reflect with their partner before making a joint decision. Some also described how their decision had been influenced by their partner’s attitude towards PND.

“I would probably prefer to get the information and then discuss it with the person I live with. What thoughts, what we want and so on.” – Woman #23, age 31, nulliparous.

Healthcare professionals’ attitudes towards PND could affect women in both directions, i.e. to pursue or abstain from testing. Some women admitted feeling pressured to have a test if it was presented by healthcare professionals as something you should do. Others described how a judgmental attitude towards testing and TOP could dissuade them from testing. One woman even described having cancelled her already booked appointment for a CUB test after her midwife had questioned it.

“So maybe you don’t follow your heart, and instead be influenced by how the medical staff… what the particular person you meet thinks.” – Woman #2, age 33, parous.

The organisation of healthcare services and the simple fact that PND is offered by the public antenatal care was interpreted as a recommendation by some women. By offering CUB at a subsidised cost only to specific age groups, e.g. women over 35, an increased probability of fetal anomalies is indirectly emphasised, making some older women feel compelled to have the test. Younger women, who due to age, were not offered CUB, often ended up not having a test even though they would have liked to. To some, the option to travel to another region and pay the full cost for the test privately was a hinder.

“I think I would see it as a recommendation, because I am so unsure myself, even if it is an offer.” – Woman #13, age 26, nulliparous.