"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

doi:10.1186/s12910-023-00994-x

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

BMC Med Ethics. 2024 Mar 2;25(1):24. doi: 10.1186/s12910-023-00994-x.

Authors

Zoe Ritchie¹, Gail Teachman², Randi Zlotnik Shaul^{3

4}, Maxwell J Smith⁵

Affiliations

¹ Faculty of Health Sciences and Rotman Institute of Philosophy, Western University, London, Ontario, Canada. [email protected].
² School of Occupational Therapy, Faculty of Health Sciences, Western University, London, Ontario, Canada.
³ Department of Paediatrics and Joint Centre for Bioethics, University of Toronto, Toronto, Ontario, Canada.
⁴ Department of Bioethics , The Hospital for Sick Children, Toronto, Ontario, Canada.
⁵ Faculty of Health Sciences and Rotman Institute of Philosophy, Western University, London, Ontario, Canada.

Abstract

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

Methods: We 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.

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

Interpretation: Our 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.

Keywords: Bioethics; Decision-making; Goals of care; Neonatal; Neonatal intensive care; Palliative care; Values; trisomy 13; trisomy 18.

Publication types

Review
Research Support, Non-U.S. Gov't

MeSH terms

Child
Ethicists*
Female
Health Personnel
Humans
Infant, Newborn
Morals*
Pregnancy
Prenatal Care
Trisomy 13 Syndrome