Parental perspectives on living with a child with HoPE

Elaine E Stashinko; Leslie A Harley; Roxanne A Steele; Nancy J Clegg

doi:10.1002/ajmg.c.30237

Parental perspectives on living with a child with HoPE

Am J Med Genet C Semin Med Genet. 2010 Feb 15;154C(1):197-201. doi: 10.1002/ajmg.c.30237.

Authors

Elaine E Stashinko¹, Leslie A Harley, Roxanne A Steele, Nancy J Clegg

Affiliation

¹ Carter Center for Brain Research in Holoprosencephaly and Related Brain Malformations, Department of Neurology and Developmental Medicine, Kennedy Krieger Institute, Baltimore, MD 21205, USA. stashinko@kennedykrieger.org

PMID: 20104617
DOI: 10.1002/ajmg.c.30237

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.

2010 Wiley-Liss, Inc.

Publication types

Research Support, Non-U.S. Gov't
Review

MeSH terms

Adult
Child
Emotions / physiology
Health Planning Guidelines
Holoprosencephaly / psychology*
Holoprosencephaly / therapy*
Humans
Parent-Child Relations*
Parents*
Perception / physiology
Quality of Life