This is a plain English summary of an original research article
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.
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.
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.
- 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.’
- 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.’
- 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.
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.
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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.