The National Maternity Bereavement Experience Survey — the first ever survey of maternity bereavement care in Ireland — gets underway today.

This online survey asks women and their partners about the bereavement care they received in an Irish maternity hospital or unit following a pregnancy loss or perinatal death. The aim of the survey is to learn from the experiences of bereaved parents to find out what is working well, and what could be improved.

Women and their partners who experienced a second trimester miscarriage, the stillbirth of a baby 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 can complete the survey at www.yourexperience.ie.

The survey contains 99 questions on topics such as communication, labour and birth, postnatal care, bereavement care, discharge and follow-up care. A number of free-text questions provide women and their partners with the opportunity to provide additional information and feedback on their personal experiences in hospital.

Minister for Health Stephen Donnelly said: “The loss of a beloved baby during pregnancy, birth or shortly afterwards is a heart-breaking experience. Ensuring that maternity bereavement care available to parents is person-centred and responsive to their needs is vital. The National Maternity Bereavement Experience Survey will give us an opportunity to listen to the collective voice of parents to learn about their lived experience of maternity bereavement care in Ireland for the first time. I understand that it may be difficult and emotional for parents who have experienced a pregnancy loss to complete this survey. Their important feedback will help to identify what is working well and areas where improvements are required in the provision of maternity bereavement care.”

Co-founder of Feileacain, the Stillbirth and Neonatal Death Association of Ireland, Marie Cregan said: “As a bereaved parent, I know how important it is for mothers and families to receive compassionate, professional and practical support following the loss of a baby. The National Maternity Bereavement Experience Survey offers parents the opportunity to share their experiences and make suggestions on how maternity bereavement care could be improved. I would strongly encourage everyone who is eligible to take the time to take part in this vital survey.”

HIQA’s Director of Health Information and Standards Rachel Flynn said: “Sadly, every year, babies die during pregnancy, birth or shortly afterwards. This is a devastating and heart-breaking time for parents and their families. We know that many parents wish to talk about their loss as well as the care they received during this difficult time. The National Maternity Bereavement Experience Survey was developed to learn from parents’ experiences.

“Through this new survey, we ask bereaved mothers and their partners to share their experiences of the care they received in hospital following the loss of their baby. Our aim is to give a voice to parents bereaved by pregnancy loss and pave the way for improvements to the standard and quality of Ireland’s bereavement services.”

Clinical Lead for the HSE National Women and Infants Health Programme, Dr Cliona Murphy, said: “The loss of a baby before, during or after birth is one of the most devastating events that can happen, having a huge effect on parents and their families. Completing the survey may be difficult, but we are grateful to women and partners willing to share insight into their experiences, as their feedback will help improve the quality of health and social care services delivered in the future.”

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:
Eimear Smith, Communications Manager
Mob: 085 880 4362
esmith@hiqa.ie
 

Notes to the editor:

• The survey is open to women who experienced a second trimester miscarriage (from 14 weeks of pregnancy), the stillbirth of a baby 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. To take part, women must have been aged sixteen years or older at the time of their loss.
• An estimated 3,000 women are eligible to participate in the survey.
• The survey can be completed online on www.yourexperience.ie between 1 September and 31 October 2022.
• The National Standards for Bereavement Care Following Pregnancy Loss and Perinatal Death were published in 2016 by the HSE. The purpose of these standards is to enhance bereavement care services following pregnancy loss and perinatal death. The National Maternity Bereavement Experience Survey seeks to explore the impact of these standards from the prospective of women and their partners.
• The survey was developed in conjunction with bereaved parents, healthcare professionals, bereavement support organisations, special interest groups, and policy-makers. Further information on how the survey was developed is available here.
• Women and their partners who have been impacted by any of these issues can contact the Patient Advocacy Service for information and support — 0818 293003 (10am – 4pm) or info@patientadvocacyservice.ie. The Patient Advocacy Service is a free, independent and confidential service.
• The National Maternity Bereavement Experience Survey is part of the National Care Experience Programme, a joint initiative by the Health Information and Quality Authority (HIQA), the Health Service Executive (HSE) and the Department of Health. The Programme also includes the annual National Inpatient Experience Survey, the National Nursing Home Experience Survey, the upcoming National End of Life Survey and the National Maternity Experience Survey.
• Resources for parents who have been bereaved by pregnancy and infant loss are available at Pregnancy and Infant Loss Ireland.