𝔖 Bobbio Scriptorium
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Parental perspectives on living with a child with HoPE

✍ Scribed by Elaine E. Stashinko; Leslie A. Harley; Roxanne A. Steele; Nancy J. Clegg

Publisher
John Wiley and Sons
Year
2010
Tongue
English
Weight
74 KB
Volume
154C
Category
Article
ISSN
1552-4868

No coin nor oath required. For personal study only.

✦ Synopsis

Abstract

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. Β© 2010 Wiley‐Liss, Inc.

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