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Parent mental health and family functioning following diagnosis of CHD: a research agenda and recommendations from the Cardiac Neurodevelopmental Outcome Collaborative

Published online by Cambridge University Press:  04 June 2021

Erica Sood*
Nemours Cardiac Center & Nemours Center for Healthcare Delivery Science, Alfred I. duPont Hospital for Children, Wilmington, Delaware, USA; Department of Pediatrics, Sidney Kimmel Medical College, Thomas Jefferson University, Philadelphia, Pennsylvania, USA
Amy Jo Lisanti
Department of Nursing and Clinical Care Services, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania, USA; University of Pennsylvania School of Nursing, Philadelphia, Pennsylvania, USA
Sarah E. Woolf-King
Department of Psychology, Syracuse University, Syracuse, New York, USA
Jo Wray
Centre for Outcomes and Experience Research in Children’s Health, Illness and Disability and NIHR GOSH Biomedical Research Centre, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK
Nadine Kasparian
Cincinnati Children’s Center for Heart Disease and Mental Health, Heart Institute and the Division of Behavioral Medicine & Clinical Psychology, Cincinnati Children’s Hospital; Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio, USA Heart Centre for Children, The Sydney Children’s Hospitals Network, Sydney, Australia
Emily Jackson
Department of Patient and Family Services, Alfred I. duPont Hospital for Children, Wilmington, Delaware, USA
Mary R. Gregory
Department of Nursing, School of Nursing and Health Professions, Missouri Western State University, Saint Joseph, Missouri, USA Department of Developmental Medicine/Behavior Sciences, Children’s Mercy Hospital, Kansas City, Missouri, USA
Keila N. Lopez
Department of Pediatrics, Baylor College of Medicine, Houston, Texas, USA
Bradley S. Marino
Department of Pediatric Cardiology, Cleveland Clinic Children’s Hospital, Cleveland, Ohio, USA
Trent Neely
Sisters by Heart/Brothers by Heart, El Segundo, California, USA
Amy Randall
Mended Little Hearts of Wisconsin, Mended Hearts/Mended Little Hearts, Albany, Georgia, USA
Sinai C. Zyblewski
Department of Pediatrics, Medical University of South Carolina, Charleston, South Carolina, USA
Cheryl L. Brosig
Herma Heart Institute, Children’s Wisconsin, Milwaukee, Wisconsin, USA; Department of Pediatrics, Medical College of Wisconsin, Milwaukee, Wisconsin, USA
Author for correspondence: Erica Sood, PhD, Nemours Cardiac Center, Alfred I. duPont Hospital for Children, 1600 Rockland Road, Wilmington, DE, 19803, USA. Tel: 302-651-6304. Fax: 302-651-5345. E-mail:


Diagnosis of CHD substantially affects parent mental health and family functioning, thereby influencing child neurodevelopmental and psychosocial outcomes. Recognition of the need to proactively support parent mental health and family functioning following cardiac diagnosis to promote psychosocial adaptation has increased substantially over recent years. However, significant gaps in knowledge remain and families continue to report critical unmet psychosocial needs. The Parent Mental Health and Family Functioning Working Group of the Cardiac Neurodevelopmental Outcome Collaborative was formed in 2018 through support from an R13 grant from the National Heart, Lung, and Blood Institute to identify significant knowledge gaps related to parent mental health and family functioning, as well as critical questions that must be answered to further knowledge, policy, care, and outcomes. Conceptually driven investigations are needed to identify parent mental health and family functioning factors with the strongest influence on child outcomes, to obtain a deeper understanding of the biomarkers associated with these factors, and to better understand how parent mental health and family functioning influence child outcomes over time. Investigations are also needed to develop, test, and implement sustainable models of mental health screening and assessment, as well as effective interventions to optimise parent mental health and family functioning to promote psychosocial adaptation. The critical questions and investigations outlined in this paper provide a roadmap for future research to close gaps in knowledge, improve care, and promote positive outcomes for families of children with CHD.

© The Author(s), 2021. Published by Cambridge University Press

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