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'We did everything we could'- A qualitative study exploring the acceptability of maternal-fetal surgery for spina bifida to parents

Crombag, N; Sacco, A; Stocks, B; De Vloo, P; Van Der Merwe, J; Gallagher, K; David, A; ... Deprest, J; + view all (2021) 'We did everything we could'- A qualitative study exploring the acceptability of maternal-fetal surgery for spina bifida to parents. Prenatal Diagnosis , 41 (8) pp. 910-921. 10.1002/pd.5996. Green open access

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Abstract

OBJECTIVE: To explore the concepts and strategies parents employ when considering maternal-fetal surgery (MFS) as an option for the management of spina bifida (SB) in their fetus, and how this determines the acceptability of the intervention. METHODS: A two-centre interview study enrolling parents whose fetuses with SB were eligible for MFS. To assess differences in acceptability, parents opting for MFS (n=24) were interviewed at three different moments in time: prior to the intervention, directly after the intervention and 3-6 months after birth. Parents opting for termination of pregnancy (n=5) were interviewed only once. Themes were identified and organised in line with the framework of acceptability. RESULTS: To parents opting for MFS, the intervention was perceived as an opportunity that needed to be taken. Feelings of parental responsibility drove them to do anything in their power to improve their future child's situation. Expectations seemed to be realistic yet were driven by hope for the best outcome. None expressed decisional regret at any stage, despite substantial impact and, at times, disappointing outcomes. For the small group of participants, who decided to opt for termination of pregnancy (TOP), MFS was not perceived as an intervention that substantially could improve the quality of their future child's life. CONCLUSION: Prospective parents opting for MFS were driven by their feelings of parental responsibility. They recognise the fetus as their future child and value information and care focusing on optimising the child's future health. In the small group of parents opting for TOP, MFS was felt to offer insufficient certainty of substantial improvement in quality of life and the perceived severe impact of SB drove their decision to end the pregnancy This article is protected by copyright. All rights reserved.

Type: Article
Title: 'We did everything we could'- A qualitative study exploring the acceptability of maternal-fetal surgery for spina bifida to parents
Location: England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1002/pd.5996
Publisher version: https://doi.org/10.1002/pd.5996
Language: English
Additional information: This version is the author accepted manuscript. For information on re-use, please refer to the publisher's terms and conditions.
Keywords: Maternal-fetal surgery, acceptability, parental perspectives, qualitative research
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL EGA Institute for Womens Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL EGA Institute for Womens Health > Maternal and Fetal Medicine
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL EGA Institute for Womens Health > Neonatology
URI: https://discovery.ucl.ac.uk/id/eprint/10131171
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