Related Experiment Video
Updated: Jun 16, 2026

Assessing the Coherence of Parents' Short Narratives Regarding their Child Using the Five-Minute Speech Sample Procedure
Published on: September 19, 2019
Parental perspectives on living with a child with HoPE
Elaine E Stashinko1, Leslie A Harley, Roxanne A Steele
1Carter 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
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.
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