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

Title

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

Creator

Ritchie Z; Teachman G; Shaul RZ; Smith MJ

Publisher

BMC Medical Ethics

Date

2024

Subject

Humans; Infant Newborn; Child; Female; Palliative care; Health Personnel; Decision-making; Pregnancy; Goals of care; Prenatal Care; Bioethics; Neonatal; Neonatal intensive care; trisomy 18; trisomy 13; Ethicists; Morals; Trisomy 13 Syndrome; Values

Description

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.

Rights

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Collection

Citation

Ritchie Z; Teachman G; Shaul RZ; Smith MJ, “"She was finally mine": the moral experience of families in the context of trisomy 13 and 18- a scoping review with thematic analysis,” Pediatric Palliative Care Library, accessed July 17, 2024, https://pedpalascnetlibrary.omeka.net/items/show/19593.