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Parental perspectives on living with a child with HoPE
Author(s) -
Stashinko Elaine E.,
Harley Leslie A.,
Steele Roxanne A.,
Clegg Nancy J.
Publication year - 2010
Publication title -
american journal of medical genetics part c: seminars in medical genetics
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.419
H-Index - 101
eISSN - 1552-4876
pISSN - 1552-4868
DOI - 10.1002/ajmg.c.30237
Subject(s) - holoprosencephaly , psychology , cohort , developmental psychology , medicine , pregnancy , genetics , biology , fetus
This article describes the experiences and perceived needs of a small cohort of parents of children with holoprosencephaly (HPE). The factors that are important to the lives of children vary across families and stages of development. As children living with HPE grow and change, parents adapt their goals and expectations to reflect their child's now and future state. Relevant literature is integrated within the discussion to support recommendations for care. © 2010 Wiley‐Liss, Inc.