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“She was finally mine”: the moral experience of families in the context of trisomy 13 and 18– a scoping review with thematic analysis [Book Review]
BMC Medical Ethics 25 (1):1-20 (2024)
Abstract
IntroductionThe value of a short life characterized by disability has been hotly debated in the literature on fetal and neonatal outcomes.MethodsWe 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.FindingsThemes constructed include (1) Pride as Resistance, (2) Negotiating Normalcy and (3) The Significance of Time.InterpretationOur 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.RelevanceThis 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.Author's Profile
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References found in this work
The theorisation of ‘best interests’ in bioethical accounts of decision-making.Giles Birchley - 2021 - BMC Medical Ethics 22 (1):1-18.
Systematic reviews of empirical bioethics.D. Strech, M. Synofzik & G. Marckmann - 2008 - Journal of Medical Ethics 34 (6):472-477.
Moral experience: a framework for bioethics research.M. R. Hunt & F. A. Carnevale - 2011 - Journal of Medical Ethics 37 (11):658-662.
Decision-making about non-invasive prenatal testing: women’s moral reasoning in the absence of a risk of miscarriage in Germany.Stefan Reinsch, Anika König & Christoph Rehmann-Sutter - 2021 - New Genetics and Society 40 (2):199-215.
“You Can Carry the Torch Now:” A Qualitative Analysis of Parents’ Experiences Caring for a Child with Trisomy 13 or 18.Joshua D. Arthur & Divya Gupta - 2017 - HEC Forum 29 (3):223-240.
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