ArticleJournal of perinatology : official journal of the California Perinatal Association2018
"We want to do everything": how parents represent their experiences with maternal-fetal surgery online.
Article in Journal of perinatology : official journal of the California Perinatal Association, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers, 1 of them a synthesis that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
5 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Maternal complications following open and fetoscopic fetal surgery: A systematic review and meta-analysis.Prenatal diagnosis · 2019Pooled it
- Maternal decision-making for patients offered prenatal myelomeningocele repair.Pregnancy (Hoboken, N.J.) · 2026Article
- Resuscitation decisions in fetal myelomeningocele repair should center on parents' values: a counter analysis.Journal of perinatology : official journal of the California Perinatal Association · 2022Article
- Maternal-Fetal Surgery: Does Recognising Fetal Patienthood Pose a Threat to Pregnant Women's Autonomy?Health care analysis : HCA : journal of health philosophy and policy · 2021Article
- 'We did everything we could'- a qualitative study exploring the acceptability of maternal-fetal surgery for spina bifida to parents.Prenatal diagnosis · 2021Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveThere is little available evidence on how patients make decisions regarding maternal-fetal surgery. We studied online patient narratives for insight on how pregnant women and their partners consider such decisions. STUDY
designWe used Google search strings and a purposive snowball method to locate patient blogs. We analyzed blog entries using qualitative methods to identify author details, medical information, and common themes.
resultsWe located 32 blogs of patients who describe maternal-fetal surgery consultation. Twenty-eight (88%) underwent fetal interventions. Most (91%) explicitly described consultation with maternal-fetal surgery teams; 83% of those depicted making decisions prior to formal consultation. Few expressed regret for decisions made (6%). CONCLUSIONS AND RELEVANCE: Patients openly share experiences with maternal-fetal surgery online. Women portray their decisions as made outside of formal medical processes and overwhelmingly feel these decisions were "right". As the field of maternal-fetal surgery expands, prospective evaluation of patient decision-making is needed.
Indexed as
Identifiers
29317765What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.