{Reference Type}: Review
{Title}: "She was finally mine": the moral experience of families in the context of trisomy 13 and 18- a scoping review with thematic analysis.
{Author}: Ritchie Z;Teachman G;Shaul RZ;Smith MJ;
{Journal}: BMC Med Ethics
{Volume}: 25
{Issue}: 1
{Year}: 2024 Mar 2
{Factor}: 2.834
{DOI}: 10.1186/s12910-023-00994-x
{Abstract}: <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.