Women’s experience of care when undergoing termination of pregnancy for fetal anomaly in England

Abstract

Objective: This study investigated women’s experience of care when undergoing termination of pregnancy for fetal anomaly (TOPFA) with a view to assisting healthcare professionals in providing optimum care to women. Background: Technological developments in antenatal screening and testing mean more women are given a prenatal diagnosis of fetal anomaly and confront the possibility of terminating the pregnancy. TOPFA is a psychologically significant life event, but there is limited evidence on how women perceive their termination care. Methods: A cross-sectional online survey was used to elicit qualitative data as part of a study examining women’s experience of the TOPFA procedure, in particular the choice of method. Women were asked to comment on what they had found helpful and unhelpful in their termination care. Participants were recruited from a national support organisation. A total of 361 women offered qualitative comments, which were analysed using thematic analysis. Results: Women’s experience of termination care varied. Five themes were identified as underpinning what women considered ‘good care’: being cared for in a timeframe and environment that feels right; receiving the right level of care; the role of healthcare professionals and support organisations; acknowledging women’s particular circumstances; and enabling women to make choices. Regarding the last theme, women particularly valued being offered a choice of termination method. Conclusions: The findings suggest that many women undergoing TOPFA perceived their care as lacking in some way. Recommendations on improving practice are made and areas of further research are suggested, which may deepen knowledge on how best to care for these women.

Keywords:

• termination of pregnancy for fetal abnormality
• perception of care
• thematic analysis
• women’s preferences
• prenatal diagnosis
• antenatal screening

Acknowledgements

We are very grateful to all the women who responded to the survey and were prepared to revisit such a difficult experience. We also acknowledge the invaluable input of the expert advisory group. Finally we thank Dr Pauline Fox for her helpful comments on the manuscript.

Additional information

Funding

Funding. This work was supported by the Department of Health (England) under the voluntary sector grant [grant number 2011/022].