The Relationship of Family Factors to Psychosocial Outcomes in Children with Hypoplastic Left Heart Syndrome at 6 Years of Age.

Autor: Mussatto KA; Milwaukee School of Engineering, Milwaukee, WI., Trachtenberg FL; HealthCore, Inc, Watertown, MA., Wang K; HealthCore, Inc, Watertown, MA., Uzark K; University of Michigan Health System, Ann Arbor, MI., Sood E; Nemours Cardiac Center, Nemours Children's Hospital-Delaware, Wilmington, DE., Lambert L; University of Utah, Primary Children's Hospital, Salt Lake City, UT., Hamstra M; Heart Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, OH., Clarke S; Division of Pediatric Cardiology, Emory University School of Medicine, Children's Hospital of Atlanta, Atlanta, GA., Morrison T; Children's Hospital of Philadelphia, Philadelphia, PA., Otto M; Medical College of Wisconsin, Milwaukee, WI., Picart A; Duke University Hospital, Durham, NC., Rathge K; Heart Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, OH., Walter P; The Hospital for Sick Children, Toronto, ON, Canada., Woodard F; Medical University of South Carolina, Charleston, SC., Pemberton VL; National Heart, Lung, and Blood Institute, NIH, Bethesda, MD.
Jazyk: angličtina
Zdroj: The Journal of pediatrics [J Pediatr] 2023 Apr; Vol. 255, pp. 50-57.e2. Date of Electronic Publication: 2022 Oct 17.
DOI: 10.1016/j.jpeds.2022.10.016
Abstrakt: Objective: The objective of this study was to describe the relationships between family factors and outcomes for children with hypoplastic left heart syndrome (HLHS).
Study Design: This cross-sectional study was ancillary to the Pediatric Heart Network Single Ventricle Reconstruction Extension Study to examine family factors including parental mental health, quality of life (QOL), family resources, function and management, and their relationships to child psychosocial outcomes (adaptive behavior, internalizing and externalizing behaviors and health-related quality of life [HRQOL]) at 6 years of age.
Results: Participants were parents (115 mothers, 71 fathers) of children with HLHS. Parents reported anxiety, QOL and family resources that were worse than the general population; 33% reported family dysfunction. There were no meaningful differences between reports from mothers and fathers. Parental perception of better child health was associated with better family management of the condition (P < .05). Several family management factors explained a moderate amount of variance in adaptive behavior (ΔR 2  = 0.08-0.14), adaptive skills (ΔR 2  = 0.19-0.21), and HRQOL scores (ΔR 2  = 0.04-0.18); little variance was explained in internalizing problems (ΔR 2  = 0.02-0.03) (all P < .05) above and beyond demographic and clinical variables.
Conclusions: HLHS has a significant impact on both children and families. Relationships between child and family characteristics may impose risk or protection. Improved understanding of these associations should guide counseling and tailored interventions.
(Copyright © 2022 Elsevier Inc. All rights reserved.)
Databáze: MEDLINE
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