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Health Professional Experiences with T18/T13 patient care

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8 papers 0 to 25 followers
By Victoria Miller Trisomy 18 Foundation
https://www.readbyqxmd.com/read/28550383/-you-can-carry-the-torch-now-a-qualitative-analysis-of-parents-experiences-caring-for-a-child-with-trisomy-13-or-18
#1
Joshua D Arthur, Divya Gupta
Trisomy 13 and 18 (T 13/18) are rare chromosomal abnormalities associated with high morbidity and mortality. Improved survival rates and increased prevalence of aggressive medical intervention have resulted in families and physicians holding different perspectives regarding the appropriate management of children with T 13/18. Families were invited for open-ended interviews regarding their experiences with the medical care of a child with T 13/18 over the past 5 years. Seven of 33 invited families were surveyed; those who had spent more than 40 days in the hospital were most likely to accept the invitation (OR 8...
May 26, 2017: HEC Forum: An Interdisciplinary Journal on Hospitals' Ethical and Legal Issues
https://www.readbyqxmd.com/read/28185147/incompatible-with-care-examining-trisomy-18-medical-discourse-and-families-counter-discourse-for-recuperative-ethos
#2
Megan J Thorvilson, Adam J Copeland
Parents whose child is diagnosed with a serious disease such as trisomy 18 first rely on the medical community for an accurate description and prognosis. In the case of trisomy 18, however, many families are told the disease is "incompatible with life" even though some children with the condition live for several years. This paper considers parents' response to current medical discourse concerning trisomy 18 by examining blogs written by the parents of those diagnosed. Using interpretive humanistic reading and foregrounding Cathryn Molloy's recuperative ethos theory (2015), we find that parents demonstrate recuperative ethos in response to physicians' descriptions of trisomy 18, particularly in rhetoric addressing survival, medicalized language, and religious and/or spiritual rhetoric...
February 10, 2017: Journal of Medical Humanities
https://www.readbyqxmd.com/read/28192544/shared-decision-making-for-children-with-trisomy-13-and-18
#3
Jeffrey P Brosco, Chris Feudtner
No abstract text is available yet for this article.
April 1, 2017: JAMA Pediatrics
https://www.readbyqxmd.com/read/27530709/medical-interventions-and-survival-by-gender-of-children-with-trisomy-18
#4
Jennifer H Donovan, Genomary Krigbaum, Deborah A Bruns
Research has typically shown limited aggressive medical interventions and low survival rates for children with full trisomy 18. Recent studies provide more positive results. This study examined 82 children with full trisomy 18 drawn from the Tracking Rare Incidence Syndromes (TRIS) project database. Children were classified into three groups according to the highest intervention received: "hospice or no intervention" (n = 5, 6.1%), "necessary interventions (enteral feeding, ventilator use)" (n = 46, 56...
September 2016: American Journal of Medical Genetics. Part C, Seminars in Medical Genetics
https://www.readbyqxmd.com/read/27458943/trisomy-13-and-18-treatment-decisions-in-a-stable-gray-zone
#5
EDITORIAL
John D Lantos
No abstract text is available yet for this article.
July 26, 2016: JAMA: the Journal of the American Medical Association
https://www.readbyqxmd.com/read/27545023/procedures-in-the-1st-year-of-life-for-children-with-trisomy-13-and-trisomy-18-a-25-year-single-center-review
#6
Justin B Josephsen, Eric S Armbrecht, Stephen R Braddock, Catherine C Cibulskis
Care of the child born with trisomy 13 or 18 has evolved over the past few decades, leading to increased healthcare utilization. We hypothesized that there has been an increase in procedures across all intensity types, including major, invasive procedures. We performed a retrospective-cohort study of children with trisomy 13 or 18 from 1990 to 2014 in a quaternary, free-standing children's hospital. Children were identified using ICD-9 billing diagnoses. Procedures were identified during these encounters and categorized by intensity (major, intermediate, or minor)...
September 2016: American Journal of Medical Genetics. Part C, Seminars in Medical Genetics
https://www.readbyqxmd.com/read/27550159/parental-hopes-interventions-and-survival-of-neonates-with-trisomy-13-and-trisomy-18
#7
Annie Janvier, Barbara Farlow, Keith J Barrington
Trisomy 13 and 18 are life-limiting conditions for which a palliative approach is frequently recommended. The objective of this study was to examine parental goals/decisions, the length of life of their child and factors associated with survival. Parents of children who lived with trisomy 13 or 18 that were part of English-speaking social networks were invited to participate in a questionnaire study. Participants answered questions about their hopes/goals, decisions regarding neonatal interventions, and the duration of their children's lives...
September 2016: American Journal of Medical Genetics. Part C, Seminars in Medical Genetics
https://www.readbyqxmd.com/read/27615591/legal-and-ethical-issues-in-neonatal-nursing
#8
(no author information available yet)
Neonatal nurses regularly face complex legal and ethical dilemmas. This article discusses the hypothetical case of Jack, a two-day-old infant, born at 39 weeks' gestation, and diagnosed with trisomy 13 (syndrome), a life-limiting condition and being cared for in a neonatal intensive care unit. Jack's prognosis is poor and he is not expected to live past two weeks of age.
September 12, 2016: Nursing Children and Young People
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