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Understanding Trisomy 18 Parent Experiences

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9 papers 0 to 25 followers
By Victoria Miller Trisomy 18 Foundation
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
Sasha E Andrews, Ann G Downey, David Scott Showalter, Heather Fitzgerald, Vivian P Showalter, John C Carey, Peter Hulac
The medical management of infants with the trisomy 13 and trisomy 18 syndromes is challenging and controversial. Both conditions have high neonatal and infant mortality, and surviving children display significant cognitive and motor disabilities. Currently, there exists a tension in the neonatal and perinatal communities regarding care. One view holds that management should consist solely of comfort care, while another opinion recommends offering medical and surgical intervention in appropriate situations. The purpose of this manuscript is to present a model for the care of fetuses and infants with trisomy 13 and 18 during the prenatal, perinatal, and postnatal periods...
September 2016: American Journal of Medical Genetics. Part C, Seminars in Medical Genetics
A Kusztrich, D Hüseman, L Garten, H Neitzel, C Bührer
BACKGROUND: While infants with trisomy 13 (T13) and trisomy 18 (T18) are known to die early, parents want to know more about life expectancy and quality of life. METHODS: 30-year single-center retrospective chart analysis (1980-2010) of cytogenetically confirmed T13 and T18 cases. Mothers of infants who had lived 3 months or longer were approached to judge their infant's quality of life and talk about their experiences with medical staff. RESULTS: Data of 18/20 T13 infants and 18/21 T18 infants could be retrieved...
September 2016: Klinische Pädiatrie
(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
Dayna L Nevay, Catriona Hippman, Angela Inglis, Arianne Albert, Jehannine Austin
INTRODUCTION: Our goal was to prospectively compare the trajectories of depression symptoms through pregnancy and postpartum between women who received normal prenatal screening results and those whose results indicated an increased risk for fetal aneuploidy. MATERIAL AND METHODS: Women completed the Edinburgh Postnatal Depression Scale (EPDS) at 4-week intervals between <26 weeks' gestation and 3 months postpartum. We categorized women into four groups: (i) negative serum screening and ultrasound results (SS(-) /US(-) , n = 103), (ii) positive serum screening/negative ultrasound results (SS(+) /US(-) , n = 42), (iii) negative serum screening/positive ultrasound results (SS(-) /US(+) , n = 19), or (iv) positive serum screening and ultrasound results (SS(+) /US(+) , n = 13), and compared EPDS scores between groups using Poisson regression...
October 2016: Acta Obstetricia et Gynecologica Scandinavica
Dua' Yousef Al-Maharma, Hiba Abujaradeh, Khadejah Fahmi Mahmoud, Reem Ahmad Jarrad
The purpose of this study was to examine the relationship between maternal grieving for perinatal loss (PL) and the perception of and attachment to children born subsequent to a recent PL among mothers in Jordan. A cross-sectional, descriptive correlational design was used. A convenience sample of 190 mothers of full-term, healthy newborns born subsequent to a recent PL was recruited from seven Maternal and Child Health Care Centers in Jordan. These mothers were assessed using the Perinatal Grief Scale (L.J...
July 2016: Infant Mental Health Journal
Cara N Cacioppo, Laura J Conway, Devanshi Mehta, Ian D Krantz, Sarah E Noon
There is an abundance of information in the literature on patient experiences with Internet support groups (ISGs). However, studies exploring these experiences in a rare disease population are scarce, even though these families are often at a disadvantage for resources, reliable information, and support. The aim of the current study was to explore the experiences with ISGs for parents of children with Cornelia de Lange syndrome (CdLS), a rare genetic diagnosis, in order to better understand the impact on emotional support and their child's medical care...
June 2016: American Journal of Medical Genetics. Part C, Seminars in Medical Genetics
M Sereshti, F Nahidi, M Simbar, M Bakhtiari, F Zayeri
INTRODUCTION & PURPOSE: Perinatal loss is one of the toughest events of life. Physiological milk secretion after perinatal loss adds to complicacy of the hardships of the event. The present study is aimed at exploring women's experience with breast problems and milk leakage after perinatal loss. METHODS: The Study was carried out through explorative quality approach with 18 participants. Sampling method was purposeful and selecting the participants from widest variety was ensured...
2016: Global Journal of Health Science
Denise Côté-Arsenault, Erin Denney-Koelsch
SIGNIFICANCE: Lethal fetal diagnoses are made in 2% of all pregnancies. The pregnancy experience is certainly changed for the parents who choose to continue the pregnancy with a known fetal diagnosis but little is known about how the psychological and developmental processes are altered. METHODS: This longitudinal phenomenological study of 16 mothers and 14 fathers/partners sought to learn the experiences and developmental needs of parents who continue their pregnancy despite the lethal diagnosis...
April 2016: Social Science & Medicine
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