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Surviving with trisomy 13: Provider and parent perspectives and the role of the pediatric palliative care program
Author(s) -
Chung Duc,
Haynes Kristina,
Haynes Russell
Publication year - 2017
Publication title -
american journal of medical genetics part a
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.064
H-Index - 112
eISSN - 1552-4833
pISSN - 1552-4825
DOI - 10.1002/ajmg.a.37984
Subject(s) - trisomy , teamwork , palliative care , perspective (graphical) , medicine , nursing , family medicine , psychology , genetics , computer science , biology , artificial intelligence , political science , law
Trisomy 13 typically denotes an overall poor prognosis in the setting of multisystem anomalies. Through a provider and parent perspective, this case illustrates the benefit of hope, communication, and teamwork through the integration of a palliative care team in the care of a medically complex child with trisomy 13, resulting in enhance survival and perceived quality of life for patient and family. © 2016 Wiley Periodicals, Inc.