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

Autor: Ritchie Z; Faculty of Health Sciences and Rotman Institute of Philosophy, Western University, London, Ontario, Canada. zritchi@uwo.ca., Teachman G; School of Occupational Therapy, Faculty of Health Sciences, Western University, London, Ontario, Canada., Shaul RZ; Department of Paediatrics and Joint Centre for Bioethics, University of Toronto, Toronto, Ontario, Canada.; Department of Bioethics , The Hospital for Sick Children, Toronto, Ontario, Canada., Smith MJ; Faculty of Health Sciences and Rotman Institute of Philosophy, Western University, London, Ontario, Canada.
Jazyk: angličtina
Zdroj: BMC medical ethics [BMC Med Ethics] 2024 Mar 02; Vol. 25 (1), pp. 24. Date of Electronic Publication: 2024 Mar 02.
DOI: 10.1186/s12910-023-00994-x
Abstrakt: 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.
(© 2024. The Author(s).)
Databáze: MEDLINE
Externí odkaz: