Evidence map›Paper›PMID 38431625›Full record

ArticleBMC medical ethics2024

"She was finally mine": the moral experience of families in the context of trisomy 13 and 18- a scoping review with thematic analysis.

Zoe Ritchie, Gail Teachman, Randi Zlotnik Shaul, Maxwell J Smith

Abstract readScoping Review
PubMed Full text at PMC Publisher
In one paragraph

Article in BMC medical ethics, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing 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

1 citing paper in PubMed.

  1. Article
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

4 authors.

Zoe RitchieFaculty of Health Sciences and Rotman Institute of Philosophy, Western University, London, Ontario, Canada. zritchi@uwo.ca.
Gail TeachmanSchool of Occupational Therapy, Faculty of Health Sciences, Western University, London, Ontario, Canada.
Randi Zlotnik ShaulDepartment of Paediatrics and Joint Centre for Bioethics, University of Toronto, Toronto, Ontario, Canada.
Maxwell J SmithFaculty of Health Sciences and Rotman Institute of Philosophy, Western University, London, Ontario, Canada.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

introductionThe value of a short life characterized by disability has been hotly debated in the literature on fetal and neonatal outcomes.

methodsWe conducted a scoping review to summarize the available empirical literature on the experiences of families in the context of trisomy 13 and 18 (T13/18) with subsequent thematic analysis of the 17 included articles.

findingsThemes constructed include (1) Pride as Resistance, (2) Negotiating Normalcy and (3) The Significance of Time.

interpretationOur thematic analysis was guided by the moral experience framework conceived by Hunt and Carnevale (2011) in association with the VOICE (Views On Interdisciplinary Childhood Ethics) collaborative research group. RELEVANCE: This article will be of interest and value to healthcare professionals and bioethicists who support families navigating the medically and ethically complex landscape of T13/18.

Indexed as

EthicistsMoralsChildFemaleHealth PersonnelHumansInfant, NewbornPregnancyPrenatal CareTrisomy 13 SyndromeBioethicsDecision-makingGoals of careNeonatalNeonatal intensive carePalliative caretrisomy 13trisomy 18Values

Identifiers

PMID38431625
PMCPMC10908114

What OpenQuestion holds

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LicenceCC BY
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Registered trials

None linked

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.