Experiences of pregnancy with major fetal anomalies
What was this project about?
The primary focus of this research was to establish the numbers of pregnancies diagnosed with a fatal fetal anomaly and to explore experiences of healthcare professionals and voluntary organisations who provide care and support to parents following such diagnoses and pregnancy loss.
As a part of her PhD, Dr Stacey Power Walsh carried out an assessment of the general public’s knowledge of fatal fetal anomaly, perinatal palliative care and termination of pregnancy for FFA. Stacey conducted a critical discourse analysis to examine how information on fatal fetal anomalies, perinatal palliative care and termination of pregnancy for fatal fetal anomalies was delivered in Irish published media. Both these studies were conducted around the time of the Referendum repealing the Eighth Amendment.
Stacey also undertook a Delphi survey to explore voluntary organisations education priorities which contributed to an education day delivered in December 2018.
As part of his MSc in Public Health, Peter Jackson led a study which explored parents' experiences of fatal fetal anomaly.
What was involved?
- Identified the incidence of fatal fetal anomalies associated with perinatal mortality from 2011 to 2016 in Ireland
- Cross-sectional telephone survey to assess the general public's knowledge of fatal fetal anomalies, perinatal palliative care and termination of pregnancy
- Critical discourse analysis on the influence of media commentary on fetal fetal anomalies
- Modified Delphi study to identify education needs of voluntary support groups who provide support to parents following a pregnancy loss and perinatal death
- Explored Volunteers' and Fetal Medicine Specialists' experiences of providing care and support, and Parents experiences of receiving care following a fatal fetal anomaly diagnosis, during the implementation of a new service of termination of pregnancy for fatal fetal anomalies.
Who was involved?
Project team
| Name | Affiliation | Role |
|---|---|---|
| Dr Stacey Power Walsh | Pregnancy Loss Research Group | PhD Student |
| Professor Keelin O'Donoghue | Pregnancy Loss Research Group | Primary Supervisor |
| Dr Sarah Meaney | National Perinatal Epidemiology Research Centre, UCC; Pregnancy Loss Research Group | Co-supervisor |
| Peter Jackson | Pregnancy Loss Research Group | MSc Student |
| Riona Cotter | Pregnancy Loss Research Group | Collaborator |
| Dr Rebecca Dennehy | Pregnancy Loss Research Group | Collaborator |
Dissemination activities
Journal articles
- Power S, Meaney S, O'Donoghue K. An assessment of the general public's knowledge of fatal fetal anomalies. Prenatal Diagnosis. 2018;38:883-890. https://doi.org/10.1002/pd.5348.
- Power S, Meaney S, O'Donoghue K. The incidence of fatal fetal anomalies associated with perinatal mortality in Ireland. Prenatal Diagnosis. 2020;40: 549-556. https://doi.org/10.1002/pd.5642.
- Power S, Meaney S, Cotter R, O'Donoghue K. Education priorities for voluntary organisations supporting parents experiencing perinatal loss: a Delphi survey. International Journal of Palliative Nursing. 2020;26(4):156-166. https://doi.org/10.12968/ijpn.2020.26.4.156.
- Power S, O’Donoghue K, Meaney S. Experiences of volunteers supporting parents following a fatal fetal anomaly diagnosis. Qualitative Health Research. 2021;31(5):835-846. https://doi.org/10.1177/1049732320987834.
- Power S, Meaney S, O’Donoghue K. Fetal medicine specialist’ experiences of providing a new service of termination of pregnancy for fatal fetal anomaly: a qualitative study. British Journal of Obstetrics and Gynaecology. 2021;128: 676-684. https://doi.org/10.1111/1471-0528.16502
- Power S, O’Donoghue K, Meaney S. Critical discourse analysis on the influence of media commentary on fatal fetal anomaly in Ireland. Health. 2023;27(2):244-262. https://doi.org/10.1177/13634593211015279.
- Jackson P, Power-Walsh S, Dennehy R, O’Donoghue K. Fatal fetal anomaly: Exploring experiences of women and their partners. Prenatal Diagnosis. 2023;43(4):553-562. https://doi.org/10.1002/pd.6311.
Policy brief
- Pregnancy Loss Research Group. Experiences of pregnancy with fatal fetal anomaly. PLRG Policy Brief 7. October 2022.
Media coverage
- Coyne, E. (2022, November 18) 'Restrictive law' forcing women to travel for abortion, doctrs warn, https://www.independent.ie/irish-news/health/restrictive-law-forcing-women-to-travel-for-abortion-doctors-warn-39760344.html.
Project status
Completed: July 2017 to July 2020 (Dr Power Walsh's PhD studies); 2021-2022 (Peter Jacksons' MSc study).
Further information
Please email Dr Stacey Power Walsh: stacey.power@ucd.ie
Funders
Dr Power-Walsh's doctoral studies were funded by the Health Service Executive.