Introduction
Pregnancy and childbirth can be joyful experiences. But they are not without risk and maternity services offer skilled support for all women and intervention when needed.
Maternity services in England are going through a period of change. The goal of the Maternity Transformation Programme is to ensure personalised, safe care for every mother and her baby. Key areas include supporting shared decision-making and personalised care, tackling inequalities, and providing a named midwife responsible for coordinating each woman’s care.
The continuity of care made possible by having a named midwife during and after pregnancy promotes an effective and trusting relationship with women. Evidence suggests this model of care can save babies’ lives, prevent early birth, reduce interventions and improve women’s experiences and clinical outcomes.
Progress has been slowed because of the COVID-19 pandemic and the maternity staffing crisis. But NHS England has committed to continue the roll-out of this safer and more personalised way of delivering care.
Personalised care gives people choice and control over the way their care is planned and received. It is based on their individual needs and preferences, on what matters to them. This Collection explores recent NIHR research into supporting pregnant women to make informed decisions and receive the care they need. Some studies focus on the mother’s health, others look at issues around their unborn baby. The Collection brings together messages from research that have been highlighted in accessible summaries - NIHR Alerts - over the past couple of years.
“This Collection highlights recent evidence that decision-making in pregnancy has unique challenges. It is not easy to balance benefits and risks, physical and psychological, for mothers and their babies, as well as for the NHS that bears the impact of treatments and complications.”
Dimitrios Siassakos, Professor in Obstetrics and Gynaecology, University College London
"This Collection showcases some of the important research that has been undertaken to understand and improve women's experiences during the perinatal period. Continuity of carer, including medical professionals, and providing evidence-based information and support to enable informed decision-making, are essential components required to provide personalised care."
Kelly Phizacklea, Public contributor, Cambridge
Women need clear information and better access to mental health care
To make informed decisions, women need to be fully supported to understand their options and the care they will receive. A recent study looked at the care first-time mothers-to-be expect after the birth of their baby. It explored what care they would ideally like, where they get their information from, and whether they feel the information they have is sufficient.
In-depth interviews were carried out with 40 pregnant women from diverse backgrounds across England. Some of the women described their anxieties about the care available to them after giving birth, and the absence of joined-up information. Several themes emerged. The researchers concluded that pregnant women need clear, comprehensive and accessible information on what they can expect after giving birth. This should specifically address any fears about being judged for seeking professional support and reassurance.
Pregnancy is an emotional experience and many women feel vulnerable and anxious. If these feelings affect a woman’s everyday life, she may need support for her mental health.
Up to one in five new and expectant mothers experience mental ill-health. They need prompt support. Without treatment, some women will go on to have long-term problems. However, pregnant and new mothers can find it hard to access mental health care.
New research showed that women from certain ethnic groups find it most difficult to access help. The study included data on 615,092 women during pregnancy and the first year after birth (the perinatal period). It looked at their use of mental health services.
Women from Black African, Asian and White Other backgrounds had poorer access to mental health services in the community than White British women. Once they had accessed the system, they made good use of the support offered. But they were more likely to be detained in hospital (involuntary admission) for severe problems requiring urgent treatment.
Different groups of women need better access to care. Good interpreters, appropriate information for all groups, and flexible, culturally-relevant services could all help. The findings are in line with a recent national audit and a large NIHR-funded database study, which highlighted the need to address inequalities in maternity care.
“It is encouraging to see research that brings new insight to various aspects of maternity care and the care of complex pregnancies. It is also greatly encouraging to see that women’s and parents’ experiences are at the forefront of these investigations, so that professionals can use best evidence in providing safe, effective and sensitive care in partnership with maternity service users.”
Elizabeth Bailey, Director of the Elizabeth Bryan Multiple Births Centre, Birmingham City University
Helping women with complicated pregnancies make informed decisions about their care
Mothers and babies benefit when midwives and specialist doctors have a close working relationship. This is especially true for women with complicated pregnancies which carry increased risks for mother and baby. These women need extra care and support to make decisions about their care.
Around 1 in 750 pregnant women have advanced long-term (chronic) kidney disease. This condition is becoming more common worldwide. Pregnancy puts additional strain on the woman’s kidneys, causing further damage. Kidney disease also increases the chance that babies will be born early and require specialist care.
New research means that doctors can now give women clear advice on the likely impact of pregnancy on their kidney function and on the health of their baby at birth. This will promote informed conversations about likely risks between doctors and individual women. It will allow hospitals to plan the care of mother and baby, including better monitoring during the pregnancy. At an anxious time, this personalised advice could comfort women as their pregnancy progresses and support decision-making about their care.
Pregnant women with pre-eclampsia need to be involved in decisions over the timing of birth. Signs of pre-eclampsia include high blood pressure and having protein in the urine. It carries risks to both mother and baby. Delivering the baby is the only cure, but if the birth is early (premature), this can cause problems for the baby.
Current national guidelines recommend a ‘watch and wait’ policy for women diagnosed with pre-eclampsia between 34 and 37 weeks of pregnancy (late pre-eclampsia). They state that women should be monitored until 37 weeks, and only then (earlier if other problems arise) should the baby be delivered. A recent study involving 901 women compared this policy with planned earlier delivery (started within 48 hours of pre-eclampsia diagnosis).
Earlier delivery was better for mothers and did not harm babies. But the babies were more likely to be admitted to the neonatal unit. This trade-off should be discussed with women with late pre-eclampsia, the researchers say. This would inform shared decision-making on the timing of delivery.
“Situations are rarely black or white. Who is better at deciding if women with pre-eclampsia at 34 to 37 weeks should give birth or wait, when both options have clear advantages and disadvantages? Neither should women make the decision without access to relevant information from robust research, nor should doctors believe we are the only ones who can interpret study findings when lay summaries and readable clinical reports have become the norm.”
Dimitrios Siassakos, Professor in Obstetrics and Gynaecology, University College London
Supporting shared decision-making when the baby has a serious condition
Pregnant women are offered a range of tests to predict whether their baby is likely to have certain health conditions. Occasionally these tests show the baby is not developing in the typical way. This means difficult decisions need to be made. It may be necessary to decide whether to continue or end the pregnancy.
When an ultrasound test suggests a baby is not developing typically, some women need to decide whether to have a new type of test that looks in detail at the baby’s genetic material (the information that has all the instructions needed for a baby to grow and develop). These tests can diagnose genetic conditions in the baby but sometimes, either no genetic condition is found, or the results are unclear. These uncertain results can be distressing during pregnancy.
A recent review of 14 studies highlighted the importance of good communication in helping parents-to-be through the process. They need to know what to expect. The researchers recommend that healthcare professionals ensure parents understand in advance that the results may be uncertain; the test may not explain what was see on the ultrasound. Parents also require time and support after receiving uncertain results, to help them understand the implications.
If the baby has a serious condition, parents need to decide whether or not to continue the pregnancy. Some parents continue, but seven in ten choose to terminate the pregnancy. This represents around 3,300 terminations each year in the UK. Recent research provides fresh insight into the decision-making process for these parents.
Shared decision-making is central to maternity care. But the new research highlights the difficulty of putting this into practice when serious conditions are diagnosed or suspected. Researchers interviewed 38 parents and 18 clinicians; they also observed 48 consultations. Parents and doctors take different approaches to difficult decisions. The research describes various approaches taken by parents and the reactions of clinicians.
The quality of the clinician-parent relationship strongly influences the parents’ decision. This relationship sets the tone for parents’ understanding of the situation and their ability to make an informed decision. The findings highlight the tensions that can emerge between parents and doctors. Clinicians need to understand and accept parents’ many different approaches to decision-making, the research concludes.
Conclusion
At a time when maternity services are being transformed, it is especially important that care is informed by the latest research.
Pregnant women should always be at the centre of their care. A personalised approach, informed and shared decision-making, equality of access, and continuity of care are all essential. This Collection provides examples of recently published NIHR research to help make this a reality. It explores ways to support pregnant women so they receive the care they value and they need.
The research conclusions highlighted in this Collection reflect all we hear in the work of the maternity transformation programme and from people using maternity services"
Jane Brewin, Tommy's charity
“Challenging situations in maternity call for shared decision-making between women, their families, and a healthcare professional they trust, often with the help of a professional interpreter. This Collection will support such informed discussions.”
Dimitrios Siassakos, Professor in Obstetrics and Gynaecology, University College London
How to cite this Collection: NIHR Evidence; Care and decision-making in pregnancy: research reveals the support women need; February 2022; doi: 10.3310/collection_49024
Author: Jemma Kwint, Senior Research Fellow (Evidence), NIHR
Disclaimer: This publication is not a substitute for professional healthcare advice. It provides information about research which is funded or supported by the NIHR. Please note that views expressed are those of the author(s) and reviewer(s) at the time of publication. They do not necessarily reflect the views of the NHS, the NIHR or the Department of Health and Social Care.
