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Supporting parenting during infant hospitalisation for CHD

Published online by Cambridge University Press:  06 August 2020

Colette Gramszlo*
Division of Behavioral Health, Nemours/Alfred I. duPont Hospital for Children, Wilmington, DE, USA
Allison Karpyn
Center for Research in Education and Social Policy, Department of Human Development and Family Sciences, University of Delaware, Newark, DE, USA
Jennifer Christofferson
Center for Healthcare Delivery Science, Nemours Children’s Health System, Wilmington, DE, USA
Linda G. McWhorter
Division of Behavioral Health, Nemours/Alfred I. duPont Hospital for Children, Wilmington, DE, USA
Abigail C. Demianczyk
Department of Psychiatry and Behavioral Sciences, Children’s Hospital of Philadelphia, Philadelphia, PA, USA
Stacey L. Lihn
Sisters by Heart, El Segundo, CA, USA
Jena Tanem
Herma Heart Center, Children’s Wisconsin, Milwaukee, WI, USA
Sinai Zyblewski
Department of Pediatrics, Medical University of South Carolina, Charleston, SC, USA
Elizabeth Lucey Boyle
Department of Pediatrics, Medical University of South Carolina, Charleston, SC, USA
Anne E. Kazak
Center for Healthcare Delivery Science, Nemours Children’s Health System, Wilmington, DE, USA Department of Pediatrics, Sidney Kimmel Medical College, Thomas Jefferson University,Philadelphia, PA, USA
Erica Sood
Division of Behavioral Health, Nemours/Alfred I. duPont Hospital for Children, Wilmington, DE, USA Center for Healthcare Delivery Science, Nemours Children’s Health System, Wilmington, DE, USA Department of Pediatrics, Sidney Kimmel Medical College, Thomas Jefferson University,Philadelphia, PA, USA Nemours Cardiac Center, Nemours/Alfred I. duPont Hospital for Children, Wilmington, DE, USA
Author for correspondence: Colette Gramszlo, PhD, Division of Behavioral Health, Alfred I. duPont Hospital for Children, 1801 Rockland Road, Wilmington, DE19803, USA. Tel: +1 302-300-2908; Fax: +1 302-651-4543. E-mail:



To characterise the parenting priorities of mothers and fathers of infants hospitalised with CHD and generate recommendations to support parenting during infant hospitalisation.

Study design:

Through online crowdsourcing, an innovative research methodology to create an online community to serve as a research sample, 79 parents of young children with CHD responded to questions about parenting during hospitalisation via private social networking site. Responses were analysed using qualitative research methods.


Three broad themes were identified: (1) establishing a bond with my baby, (2) asserting the parental role, and (3) coping with fear and uncertainty. Parents value provider support in restoring normalcy to the parenting experience during infant hospitalisation.


Care teams can support parenting during infant hospitalisation by promoting parents’ roles as primary caretakers and decision-makers and attending to the emotional impact of infant hospitalisation on the family.

Original Article
© The Author(s), 2020. Published by Cambridge University Press

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