Parental perspectives on living with a child with HoPE.
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.
Stashinko
Elaine E
EE
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
Harley
Leslie A
LA
Steele
Roxanne A
RA
Clegg
Nancy J
NJ
D000328:Adult; D002648:Child; D004644:Emotions / Q000502:physiology; D006287:Health Planning Guidelines; D016142:Holoprosencephaly / Q000523:psychology* / Q000628:therapy*; D006801:Humans; D010287:Parent-Child Relations; D010290:Parents; D010465:Perception / Q000502:physiology; D011788:Quality of Life