The results of the first National Maternity Bereavement Experience Survey have been published today. 

The survey, which is the first ever national survey of maternity bereavement care in Ireland asked women and their partners about the bereavement care that they received in an Irish maternity hospital or unit following a pregnancy loss or perinatal death. The aim of the survey was to learn from the experiences of bereaved parents in order to improve the standard and quality of maternity bereavement care in Ireland.

Women and their partners who experienced a second trimester miscarriage, a stillbirth or the early neonatal death of a baby in one of Ireland’s 19 maternity units or hospitals between 1 January 2019 and 31 December 2021 were invited to participate in the National Maternity Bereavement Experience Survey. In total, 655 women and 232 partners or support persons took part in the survey. The willingness of participating parents to share their experiences of such a difficult and painful time will help to improve maternity bereavement care in Ireland. 

Participants shared their experiences of the care they received, from communication and information at the time of antenatal diagnosis, through to labour and birth, postnatal and bereavement care, neonatal care, investigations, discharge home, follow-up care and care in the community.  

The findings of the National Maternity Bereavement Experience Survey show that 74% of participants rated their overall care as ‘very good’ or ‘good’, and 26% rated their care as ‘fair to poor’. Participants praised staff for their caring and sensitive attitudes, with numerous comments mentioning midwives and chaplaincy staff in particular.

Participants identified areas where care can be improved, particularly in relation to information and support relating to grieving, physical recovery, and mental health after leaving hospital. Participants expressed a desire for dedicated spaces in hospitals for grieving parents; more consistent communication across services involved in their care; additional supports for physical and mental health; and more support for partners.

The survey showed that ‘care after birth and meeting your baby’, rated as the highest-scoring stage of care. 82% of participants said that their baby was presented in a respectful and sensitive manner, and participants felt that they could spend as much time as they wanted with their baby.

The highest-scoring question for partners related to feeling supported to meet their baby, with 81% of participants saying that healthcare staff ‘definitely’ did enough to support them if they wanted to meet their baby.

The lowest-scoring stage of care was ‘discharge’, with 47% of participants saying that they were not given information about changes they might experience to their mental health before they were discharged from hospital. Partners also rated clear explanations, involvement in decisions and needs being acknowledged, poorly. 14% of participants said that healthcare professionals did not explain what was happening in a way they could understand, while 20% felt that they were not involved in decisions about their baby’s care. In addition, 17% of participants felt that healthcare professionals did not acknowledge the partner or support person’s needs. Participants also referred to the negative impact of the pandemic, particularly in relation to the impact of restrictions and limitations on the attendance of partners and family members.

Responding to the survey findings, Minister for Health Stephen Donnelly said: “To lose a much-wanted and loved baby, whether during pregnancy, birth or afterwards, is a devastating event for parents. It is vital the care that bereaved women and their partners require at such a difficult time is compassionate and person-centred, and that it responds to those very sensitive needs appropriately. The National Maternity Bereavement Experience Survey has allowed us to listen to parents and to learn about their experience of maternity bereavement services in Ireland. I would like to commend everyone who took part in the Survey and acknowledge that doing so must have been a difficult and emotional process. 

The results of the Survey show us that experiences of our maternity bereavement services are largely positive, and it is really important that we see consistency across our health service. We can also see where things have not worked so well, and it is important now that the findings of the Survey are used to drive improvements for the women and families who, regrettably, require maternity bereavement care.”

HSE CEO, Bernard Gloster said: “I want to thank the women and their partners who took the time to share their experiences by completing this survey.  We know the loss of a baby before, during or after birth is one of the most difficult and saddest events that can happen to parents and their families. We are truly grateful to them for sharing their experiences and I want them to know that feedback has helped and will continue to help to improve the quality of health and social care services. 

In response, the HSE is today publishing our ‘Response to the National Maternity Bereavement Experience Survey’ (NMBES) Report, with information on the quality improvement plans underway in our hospitals to improve patients’ care experiences. These quality improvement plans have been developed in direct response to the feedback from parents and in our response report today we outline initiatives that are already underway and lay out our plans for ongoing quality improvement.

Overall we are encouraged by the feedback from the National Maternity Bereavement Experience Survey and the overall high rates of satisfaction with various aspects of bereavement care. However we acknowledge that 26% of the participants rated their care as ‘fair to poor’ and I am sorry these women and their partners didn’t receive the level of service and care they should have.  

I want to make it clear that improving the experience of healthcare services for all is a key priority for the HSE and the National Women and Infants Health Programme (NWIHP). This survey provides us with important insights into the survey participants’ care experiences across our hospital and community services and identifies areas for improvements to the standard and quality of Ireland’s maternity bereavement services.”

Speaking on the release of these survey results, HIQA CEO Angela Fitzgerald said: “The death of a baby during pregnancy, birth, or shortly afterwards is a heart-breaking experience for women and their partners. We want to ensure that Ireland has a maternity bereavement system in place which has compassion and empathy at its core; a system where bereaved parents are supported and where they and their babies are treated with the utmost dignity and respect during such a challenging time.
 
The National Maternity Bereavement Experience Survey has allowed us to hear about the experiences of these bereaved parents, in their own words, for the first time. Personally, I would like to express my gratitude to all of the participants – the women and their partners, who shared their experiences with us during this difficult time. Their voices and experiences will help to shape the future of Irish maternity bereavement care.”

The HSE and the National Women and Infant Health Programme (NWIHP) will use the survey findings to inform and underpin NWIHP’s work across a range of current and future projects and programmes. The results will also inform the development of quality improvement plans at national and local levels. The Department of Health will use the information gathered to inform the development of policy in relation to maternity bereavement care. Finally, the findings of the survey will inform HIQA’s approach to the monitoring of maternity care. 

To find out more about the National Maternity Bereavement Experience Survey, visit www.yourexperience.ie and follow us on social: Instagram, Twitter and Facebook.

Ends.

For further information please contact:
Marty Whelan, Head of Communications & Stakeholder Engagement
085 8055202
mwhelan@hiqa.ie 

Notes to the editor:

• The survey used an online, self-selecting model and was promoted through a comprehensive public awareness and media campaign in order to inform all eligible women and partners of the survey. Participation in the survey was voluntary and confidential.
• Women aged 16 or over, and their partners, who experienced a second trimester miscarriage (from 14 weeks of pregnancy), a stillborn infant or the early neonatal death of a baby in one of Ireland’s 19 maternity units or hospitals from 1 January 2019 to 31 December 2021, were eligible to participate in the National Maternity Bereavement Experience Survey.
• The survey questionnaire contained 99 questions which explored the pathway of maternity bereavement care from communication and information at the time of antenatal diagnosis, through to maternity hospital care, and follow-up care provided in the community after leaving hospital.
• Over 180 people, including bereaved parents, healthcare professionals such as clinical midwife/nurse specialists in bereavement and loss, chaplains, social workers, support and advocacy representatives, policymakers, and academic experts were involved in developing and selecting the questions most relevant to the Irish context.
• The survey period covered the experiences of people who experienced losses both before and during the COVID-19 pandemic. The pandemic affected some aspects of how care was provided, necessitating the introduction of hospital restrictions and limitations on the attendance of partners, among other measures. Comparisons were made between participants who experienced losses prior to the onset of the COVID-19 pandemic in March 2020, and those who experienced losses after that time. While some small differences were found between ratings of care for those who experienced losses before the onset of the pandemic and those who experienced a loss during the pandemic, none of these differences were statistically significant