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

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.