Research published in the latest Journal of Advanced Nursing shows that although women wanted to be told immediately if a problem was detected, they didn’t want a detailed list of possible problems flagged up in advance, especially as anomalies only affect about two per cent of pregnancies.
Joan Lalor from Trinity College, Dublin, carried out in-depth interviews with 38 women. 35 were carrying a single baby with detected anomalies and three were carrying twins – one with anomalies in both twins and the other two with one healthy baby and one baby with anomalies.
The women were interviewed for between one and three hours in their own homes after anomalies were detected during their second trimester scan. The aim of the study was to discover how prepared women actually were for an adverse finding during a routine ultrasound.
Ten of the women were carrying their first child and 28 had been pregnant before. The expectant mothers ranged from 18 to 44 years, with an average age of 33.
15 of the 39 fetuses were affected by lethal anomalies and 11 were non lethal. Surgery was possible in a further 12, but five of these carried a significant risk of death. One displayed a number of anomalous markers, but the prognosis was uncertain.
“The question about how much information should be given to women before scans is one that has challenged healthcare professionals for decades” says Lalor, who co-authored her paper with Professor Cecily Begley, also from the College’s School of Nursing.
“For example, the UK’s Royal College of Obstetricians and Gynaecologists has emphasised the need for healthcare professionals to make the objectives of a second trimester scan for anomalies very clear to women. This includes providing them with details of the anomalies that could be detected, so that they can decide whether or not they want the scan to go ahead.”
However, the authors are concerned about the effects that pre-scan warnings could have on pregnant women, as most have extremely positive experiences of ultrasounds and attend them to seek reassurance.
“As only two per cent of pregnant women are likely to be told that their baby has a fetal anomaly when they have their 20 week scan, providing extensive details of what could go wrong would cause needless anxiety for a lot of women” she points out.
“This view is shared by the majority of the women in our study. Despite the fact that they received very bad news during their second scan, they still told us that they felt that pre-scan warnings were inadvisable.”
Aoife was one of the women who disagreed with pre-scan warnings, saying that pregnancy shouldn’t be treated as a disease. “Keep it normal because when there is something wrong you have plenty of time to get upset and freak out about it” she said.
Another study participant, Tara, told the researchers that healthcare professionals needed to find a balance between telling expectant mothers nothing and “frightening the living daylights out of people”.
“Most women don’t want to be confronted with a big list of things that can go wrong” she pointed out.
And Sian added that if she’d been given a list of detectable anomalies she’d have been fretting for a week before her scan. “And who wants that?” she asked.
Most of the women the researchers spoke to had no idea there was anything wrong with their baby as most felt their pregnancies were progressing normally.
“Women expressed how, in addition to already having had healthy children, feeling well, experiencing normal pregnancy symptoms and an absence of fetal anomalies in their family and immediate social circle increased their confidence that their baby was OK” adds Lalor.
“This, together with the routine nature of the scan and the excitement the woman and her partner felt at seeing their baby on the screen made receiving bad news even more traumatic.”
But most of the women still felt that it was better to know as early as possible if an anomaly had been detected as it gave them more time to prepare, tempered their excitement and made their plans for the future more realistic.
“It’s worth it in case there was anything they could do that might save the baby” said study participant Aisling. “No matter what, it’s better than finding out at the birth.”
“On balance I think it is better to know” added Laoise during her interview. “Obviously the torture is longer but at the same time we have had more time…every week that goes by you start imagining your baby more and you do probably start making plans for the future.”
“None of the women we spoke to regretted having their anomaly scan and they said they would continue to recommend them to other women” says Lalor.
“All of the women said that it was better to know when a fetal anomaly was detected, regardless of whether interventions were available to improve the pregnancy or its outcome.
”But the majority were clear that they didn’t support providing women with a list detailing the possible problems that could occur before a scan regardless of what the scan found.”
Lalor points out that many women have a scan to check if the baby is OK rather than to find any anomalies. She recommends that healthcare professionals need to schedule in sufficient time before scans to ask women about their specific worries and provide information tailored to their individual needs.
This, she maintains, is a better option than an across the board system of pre-scan warnings.
The research carried out by Lalor was funded by Health Research Board Dublin. Women taking part in the study gave permission for their comments to be used but their names have been changed to respect their privacy.
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