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Staff in neonatal units primarily care for babies. However, parents are under extreme stress and their needs are not always understood. New research aimed to raise awareness of parents’ needs and ultimately, to improve care. Appropriate care can influence how well they cope during this time and their future well-being, if the baby then dies.

Researchers collected data on the experiences of mothers whose babies had died as newborns. They wanted to find out what parents needed around the time their baby died and afterwards, what they found helpful and what, looking back, they would have liked to have happened.

Mothers in the study expressed their intense need for physical contact with their baby. They emphasised the importance of the care and parenting they could provide during the baby’s short life.

The research calls for family-centred care which empowers parents. They  need to be treated as a parents, to be listened to, and to receive sensitive, responsive care.

Further information on specialist treatment for newborn babies is available on the NHS website.

What’s the issue?

Specialist hospital facilities called neonatal units provide care for newborn babies who are born early (premature) or are very unwell, sometimes following difficulties during labour and birth. Many babies in neonatal units are soon well enough to leave. But some do not recover, and if a baby dies, parents may look back critically at the care, information and support they received at this time.

The quality of the care parents receive can influence how they deal with their loss both at the time and in the longer term. Future plans, their relationship with their partner, the rest of the family and with the NHS, can be affected by the care they receive at this traumatic time in their lives.

There is a drive towards family-centred bereavement care when a baby dies, which is now embedded within the National Bereavement Care Pathway. Family-centred care also means involving the family in decision-making and daily care of their baby while still alive.

In neonatal units, it can be difficult for parents to approach their babies. Premature babies have delicate skin and need to be handled with more care than a full-term baby. Babies may have feeding or oxygen tubes attached, which can make handling them difficult.

Not all babies are admitted to these specialist units, and for some parents the delivery suite or theatre may be the only place where they see and have contact with their baby.

Most research to date has looked at the feelings of parents experiencing stillbirth or miscarriage. Little work has been done to explore the experiences of parents whose baby died shortly after birth. This group of mothers may have quite different needs.

Researchers gathered data on the experiences of parents whose babies died within 28 days of birth. They wanted to find out what mattered to them most before and after their baby died. Understanding parents’ needs should help staff to provide better support and care for the whole family.

What’s new?

Researchers sent a questionnaire to mothers whose babies had died within 28 days of birth. They included information about support charities (including Bliss and Sands). The questionnaire asked about care during pregnancy, labour and birth, and around the time their baby died.

The questionnaire was returned by 249 (30%) mothers and most (78%) added extra information, describing their experiences in their own words. This is a high response rate for a national maternity survey. Respondents were more likely than in other surveys to be born in the UK and to live in advantaged areas.

Most respondents (64%) had babies who were admitted to a neonatal unit. The other babies died on the labour ward. Around half (51%) of those admitted to a neonatal unit died within 24 hours.

Three overarching needs emerged from the responses.

  1. The need to be close

Mothers expect to hold their baby immediately after birth. When this was not possible because the baby was taken to a neonatal unit, mothers counted the hours and minutes until they would next have contact. Some were supported by staff to spend time with their baby. One said: ‘We were not given a time limit; we were allowed to decide how long we wanted to spend with our son. We were supported to hold him.’

However, others said that staff did not appreciate their need for contact with their baby. For example: ‘… they didn't tell us for 4 hours that my baby was having serious problems. Neither baby’s father nor my mother were allowed in. This is time we'll never get back.’

Women described a sudden absence when their baby was moved into a neonatal unit. This left them reliant on staff for information, and they sometimes had to wait hours for an update.

Being cared for on a maternity ward was distressing for mothers of unwell or premature infants: All I could hear from my room was mothers with newborns. Leaving and returning to my room was stressful and traumatic as mothers were leaving with their babies, people with congratulation balloons etc.’

  1. The need to be treated as a parent

Parents wanted recognition of their role. Mothers wanted to bathe, dress and feed their baby, and to change nappies. Being asked, informed and directly involved in care, gave them a small sense of control. However, they relied on staff to give them these opportunities.

Some women described missed opportunities to make memories: ‘I wish the staff would have said to me do we want a picture taking of me, my fiancée and [Name] as we don’t have one of us all together… Which at the time we didn’t think of, this due to being distressed.’

  1. The need for responsive care

A key issue for women was the quality of care they had received. Communication was critical when risks to the baby were identified. One mother said: ‘… I was informed from the very beginning that the baby may not survive so was able to prepare myself. I couldn’t have wished for more understanding and caring midwives.’

However, experiences were mixed. Another said: ‘…My consultant lacked in people skills and often left us feeling so distressed by the information she gave us—there is a way to impart difficult information and she didn’t have it.

Some women expressed gratitude for care that was responsive to their needs. For example: ‘The hospital allowed both my husband and mum to stay with me during the whole stay and delivery of our daughter… All members of staff we dealt with before, during and after her death were excellent and I couldn’t praise them highly enough.’

Why is this important?

This study found that women and their families needed close physical contact with their baby, to be recognised as a parent and to receive care that was responsive to their individual needs. Putting the family first before and after the death of a baby must be at the forefront of decisions made by those organising and providing care.

The key finding was that parents need to be empowered to be close to and to care for their unwell baby wherever possible. This is in line with other research that found that creating memories of their baby, by taking photos of the baby or hand and footprints, for example, could help families cope with their absence in the future.

As a result of this study, the researchers recommend:

  • potential problems with the baby’s health should be identified early and discussed with parents
  • parents should be able to care for, and spend as much time as possible with, their infant
  • parents should have all information about their infant’s health and be involved in decisions where possible
  • mothers should be cared for in a private room, away from the sounds of families with healthy babies, and not on a maternity ward.

What’s next?

The survey was sent to women, but the answers included some information about fathers; replies were often about the whole family. Further research should explore the needs of fathers or partners.

These findings support the recommendations of the National Bereavement Care Pathway and inform the next updates to this pathway. As of March 2022, the pathway is being adopted by 99 trusts in England.

The researchers say their work has already been shared with the main charities working in this area, and formally and informally with bereavement midwives to help them to understand what parents go through when their baby dies . They hope it will be shared more widely and used in training for midwives and neonatal staff.

You may be interested to read

This NIHR Alert was based on: Redshaw M, and others. ‘This is time we’ll never get back’: a qualitative study of mothers’ experiences of care associated with neonatal death. BMJ Open 2021;11:e050832

Bliss: a charity campaigning for and supporting the families of babies born premature or sick.

Sands: the leading stillbirth and neonatal death charity in the UK.

Neonatal Death Bereavement Care Pathway, published in February 2020.

 

Funding: This paper is based on research funded by the NIHR Policy Research Programme, conducted through the Policy Research Unit in Maternal Health and Care.

Conflicts of Interest: The study authors declare no conflicts of interest.

Disclaimer: NIHR Alerts are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that views expressed in NIHR Alerts are those of the author(s) and reviewer(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.


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Comments

Study author

Most of the data we have are around stillbirth and late miscarriage. We were keen to find out more about the experiences of mothers whose babies had died soon after birth. We recognised that these mothers, who have seen or held their living infants, will have different experiences from mothers who had never seen or held their living infants.We chose to use a questionnaire to collect experiences because of the emotional toll an interview would have on parents. We also felt that only a small subset of mothers would agree to an interview which might mean that experiences were less generalisable. We focused on the mothers, though we asked who completed each questionnaire. In many responses, answers were ‘we’ not ‘I’, indicating that the questionnaire was probably filled out by both parents together.There is room for improvement in the care of these parents. Better communication between staff and parents, and simple things staff can do to increase the contact a mother has with her infant, can reduce distress. In the recent and present context, we are concerned about the impact COVID-19 has had on the care of these infants and the experience of parents.Maggie Redshaw, Psychologist, University of Oxford 

Bliss

Nothing can diminish the pain or grief a family will experience after the death of a baby. Enabling parents to be partners in care delivery is vitally important throughout their baby’s time on the neonatal unit, and parents should be supported to maximise the opportunities for caregiving - not just at the point of end-of-life care.The Bliss Baby Charter supports neonatal services to offer excellent family-centred care - we understand the importance of parents’ involvement in decision making and care, for allowing parents to be parents to their baby, and this study from the NIHR highlights the positive impact for families when end of life care is managed well, with parents at the heart.Bliss is also proud to be involved in the National Bereavement Care Pathway (NBCP) which supports all hospital settings to provide excellent bereavement care to all families experiencing pregnancy and baby loss.Peter Bradley, Director of Services, Bliss: for babies born premature or sick 

Sands 

At Sands, we know the death of a baby has profound and life changing impacts on parents. Parents often tell us that no aspect of their life is unaltered by this experience.The precious moments they spend with their baby will form hugely important memories. Often parents replay the detail of how their baby was cared for and died - these memories are intertwined with those of their baby. The findings of this study provide further evidence of parents’ unmet needs and the potential positive impact of high-quality care.It is vital that staff communicate with parents sensitively, providing them with the information they need in a way that they can understand. Staff need to be trained and supported in offering parents memory-making opportunities that will enable them to forge enduring bonds after they say goodbye. For example, parents need opportunities to carry out their parenting role, perhaps by washing and dressing their baby.Recently published findings from the Ockenden enquiry have shown the impact when bereaved parents’ experiences of care fall short, an absence of kindness causing particular pain. Service providers and trusts can improve the quality and consistency of care by signing up to the National Bereavement Care Pathway, by ensuring staff have the time needed to spend with parents and offer good care, and by providing opportunities for staff to receive training and support.Mehali Patel, Senior Research Officer, Sands, Stillbirth and Neonatal Death Charity 

Lived experience

My child did not die thankfully, but I have experience of the trauma that separation brings in those first few days. He was born with undiagnosed Down’s syndrome, blocked bowel and holes in his heart. We were separated when he became very ill and needed emergency life-saving bowel surgery at 2 days old which was followed by 5 days in intensive care and six weeks in a neonatal unit.This paper will hopefully ensure that, however urgent and difficult the situation, parents’ needs for proximity, involvement, guidance and parental recognition are considered more thoughtfully during every step of their child's care. Parents should be prepared for difficult situations and given updates about their child more quickly. They need to be involved fully in decisions which will lead to separation between mother and child. Finally, parents need to be guided and counselled throughout, so that where they may be in shock, anxious or hesitant, they are encouraged and supported in creating memories such as bathing their child and having photos taken.Training and policies should be put in place to ensure raised awareness amongst health professionals. Continuity of approach should mean that a change of shift or location does not lead to a change of care or reduced communication and involvement. This approach should wrap around the parent and continue into the community.It would be valuable to conduct similar research in dads to see how they can be better supported.Ann Kenwright, Public Contributor, Liverpool 

Neonatologist

Supporting parents through neonatal death is challenging for all involved, and there is a scarcity of research to guide healthcare professionals. This paper offers key learning, directly from mothers, which would be highly valuable for all team members to reflect upon and learn from. Its insights could empower staff to offer better family-integrated care during neonatal death and during bereavement.The paper reinforces that time is valuable for parents who face the death of their baby. Key messages include that parents need to have contact with their baby while their baby is alive. They need to be supported as much as possible to be involved in the care of their infant and to be treated like parents. They need to be listened to.The needs of parents who experience, or are at high risk of experiencing, neonatal death need to be considered by those organising or commissioning their services. Parents want to be close to their infants in neonatal intensive care. However, commissioning support and government financial support for parental accommodation, income and childcare are limited or non-existent. This paper enhances the case for services, facilities and infrastructure investment to keep parents together with their unwell infants during intensive care.The paper included examples of care that needed improvement. It described mothers being cared for in delivery suite rooms next to empty cots. Others were separated from their dying baby, whilst alongside other mothers with healthy and crying newborn babies. This is not appropriate and needs addressing by maternity services and networks.The parental voice is valid and powerful, and provides critical learning which can be used for staff training. Maternity and neonatal staff can be empowered to listen to parental needs and requests. As shown from this paper, they should seek to facilitate increased physical contact and parental involvement with the baby from delivery. The authors state that this is 'not necessarily anticipated by staff or offered'. But staff can better appreciate the value parents place on time with their babies, particularly when time is short.Paul Cawley, Consultant Neonatologist, Evelina Children’s Hospital Neonatal Intensive Care Unit, Guy’s & St Thomas’ NHS Foundation Trust, London  

Researcher 

I hope these findings change the way midwives and neonatal nurses routinely deliver care in cases of neonatal death, and that senior leaders and policy makers support such changes. This could lead to further guidelines on how neonatal staff can safely and effectively support mothers to care for their babies, even when they are critically unwell.Further exploration, based on this study, is needed. For example, do neonatal nurses and midwives predict issues in supporting mothers in the ways which are identified as important in this paper?As the authors note, some groups of women are under-represented, and the response rate is low. This may limit the generalisability of the findings because we have no way of knowing whether groups of women with a particular set of experiences are less likely to respond. For example, those with the worst experiences may decline to respond, as may those with the best experiences of care. Therefore, it is difficult to know if all experiences are represented in the sample.Isabelle Harrison, Health and Wellbeing Researcher, NHS Grampian 

Neonatologist

This paper is important reading for all maternity and neonatal clinical staff, to give them a better appreciation of key issues for parents. It encourages us to improve practice as a matter of priority. Changes to processes are needed to improve parents’ experience when they have lost a child in the neonatal period.Overall understanding and appreciation of palliative care has improved in the last decade. The primary survey was done several years ago and one hopes that practice has improved to some extent since then.Minesh Khashu, Consultant Neonatologist & Professor of Perinatal Health, University Hospitals Dorset
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