Evidence map›Paper›PMID 42531219›Full record

ArticlePloS one2026

Parental perspectives of prenatal counseling and decision making for termination or hospice birth due to fetal congenital heart defects.

Grace Knowles, Diana Madden, Leonardo Barrera, Harshman Sihra, Lynn M Yee, Jessica T Fry, William A Grobman, Natalia Henner, Angira Patel, Sheetal Patel and 1 more

Abstract read
In one paragraph

Article in PloS one, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

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.

2 · The registry

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.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

11 authors.

Grace KnowlesDivision of Palliative Care, Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois, United States of America.
Diana MaddenSmith Child Health Outcomes Research and Evaluation Center, Stanley Manne Children's Research Institute at Lurie Children's, Chicago, Illinois, United States of America.
Leonardo BarreraSmith Child Health Outcomes Research and Evaluation Center, Stanley Manne Children's Research Institute at Lurie Children's, Chicago, Illinois, United States of America.
Harshman SihraUniversity of Cincinnati, Cincinnati, Ohio, United States of America.
Lynn M YeeDepartment of Obstetrics and Gynecology, Northwestern University Feinberg School of Medicine, Chicago, Illinois, United States of America.
Jessica T FryDivision of Palliative Care, Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois, United States of America.
William A GrobmanDepartment of Obstetrics and Gynecology, The Warren Alpert Medical School of Brown University, Providence, Rhode Island, United States of America.
Natalia HennerDivision of Palliative Care, Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois, United States of America.
Angira PatelDivision of Cardiology, Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois, United States of America.
Sheetal PatelDivision of Cardiology, Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois, United States of America.
Joyce L WooDivision of Cardiology, Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois, United States of America.ORCID https://orcid.org/0000-0001-6958-4903

Funding

Prenatal Care and Postnatal Outcomes for Publicly Insured Children with Congenital Heart DefectsK01HL171819 · NHLBI · LURIE CHILDREN'S HOSPITAL OF CHICAGO · PI Joyce L Woo · 2025 to 2026
$337k
NHLBI NIH HHS K01 HL171819
6 · The paper itself

Abstract

objectiveTo evaluate perspectives of counseling and decision making among birthing parents who chose termination or hospice birth due to a fetal congenital heart defect (CHD).

methodsQualitative analysis of semi-structured interviews with birthing parents who chose either termination or hospice birth due to severe fetal CHD. Participants were recruited from a purposive sample of those who received multidisciplinary counseling at a tertiary congenital heart surgical center between 2019-2023. Thematic analysis was conducted in five stages, using an integrated deductive-inductive approach.

resultsIn total, 20 individuals were eligible; 10 completed interviews. Identified themes were categorized in two domains: Experiences During Counseling and Individual Factors Affecting Decision Making. Themes in the first domain included: areas for improvement during counseling, perceived strengths of counseling, patient attributes affecting counseling, and views on provider recommendations. Themes in the second domain included: emotions affecting decision making, value for reproductive autonomy, family factors, internal factors, outside input, and desire for resources.

conclusionsIn this study, birthing parents who chose termination or hospice for fetal CHD appreciated information extending beyond clinical outcomes to include family and financial impacts. Their value for reproductive autonomy reflects the need for clinicians to gain skills in empathetic and neutral counseling of all management options.

Indexed as

CounselingDecision MakingHeart Defects, CongenitalParentsAdultFemaleHumansMalePregnancy

Identifiers

PMID42531219
PMCPMC13423054

What OpenQuestion holds

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LicenceCC BY
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Registered trials

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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.