%0 Review
%T "She was finally mine": the moral experience of families in the context of trisomy 13 and 18- a scoping review with thematic analysis.
%A Ritchie Z
%A Teachman G
%A Shaul RZ
%A Smith MJ
%J BMC Med Ethics
%V 25
%N 1
%D 2024 Mar 2
%M 38431625
%F 2.834
%R 10.1186/s12910-023-00994-x
%X <B>BACKGROUND: </B>The value of a short life characterized by disability has been hotly debated in the literature on fetal and neonatal outcomes.<BR><B>METHODS: </B>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.<BR><B>RESULTS: </B>Themes constructed include (1) Pride as Resistance, (2) Negotiating Normalcy and (3) The Significance of Time.<BR><B>CONCLUSIONS: </B>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.<BR><B>CONCLUSIONS: </B>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.