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“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

HEC Forum 29 (3):223-240 (2017)

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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. [REVIEW]Maxwell J. Smith, Randi Zlotnik Shaul, Gail Teachman & Zoe Ritchie - 2024 - BMC Medical Ethics 25 (1):1-20.details 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 (...) Download Export citation Bookmark
Introduction: Childhood and Disability.Erica K. Salter - 2017 - HEC Forum 29 (3):191-196.details From growth attenuation therapy for severely developmentally disabled children to the post-natal management of infants with trisomy 13 and 18, pediatric treatment decisions regularly involve assessments of the probability and severity of a child’s disability. Because these decisions are almost always made by surrogate decision-makers and because these decision-makers must often make decisions based on both prognostic guesses and potentially biased quality of life judgments, they are among the most ethically complex in pediatric care. As the introduction to HEC Forum’s (...) Download Export citation Bookmark

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