Perception scores of siblings and parents of children with hypoplastic left heart syndrome

Congenital Heart Disease
Elizabeth C CarisClifford L Cua

Abstract

Siblings of children with chronic medical conditions endorse a lower quality of life compared to age-matched peers. Caregiver and sibling-self report of adjustment are often discordant. Congenital heart disease significantly affects family life. To date, there have been no studies addressing the functioning of siblings of children with hypoplastic left heart syndrome, one of the most severe forms of congenital heart disease. The goal of this study was to assess the impact of hypoplastic left heart syndrome on sibling's quality of life as well as the caregiver's perception of this effect. Cross-sectional study using a web-based survey distributed via various listservs targeted towards families of children with hypoplastic left heart syndrome. Employed the Sibling Perception Questionnaire, designed to assess sibling and caregiver perceptions of adjustment to chronic illness. A Negative Adjustment Composite Score was calculated for each respondent, with higher values representing more negative adjustment. Thirty-five caregivers responded. Majority of caregivers were female (74%), white (86%) and college educated (54%). Thirty-two siblings participated, ranging in age from 7 to 30 years of age (12.5 ± 6.3). Most children with hypop...Continue Reading

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Jun 21, 2016·Congenital Heart Disease·Elizabeth C CarisClifford L Cua

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Citations

Mar 29, 2020·Journal of Child Health Care : for Professionals Working with Children in the Hospital and Community·Roses ParkerStephen McKeever
Apr 30, 2021·Journal of Child Health Care : for Professionals Working with Children in the Hospital and Community·Alice S SchamongElke Kalbe
Nov 27, 2021·Cardiology and Therapy·Benjamin NicholasClifford L Cua

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