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Important knowledge for parents of children with heart disease: parent, nurse, and physician views

Published online by Cambridge University Press:  20 January 2015

Joshua Daily ,
Mike FitzGerald ,
Kimberly Downing ,
Eileen King ,
Javier Gonzalez del Rey ,
Richard Ittenbach  and
Bradley Marino
Joshua Daily*
Affiliation:
Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, United States of America
Mike FitzGerald
Affiliation:
Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, United States of America
Kimberly Downing
Affiliation:
Institute for Policy Research, University of Cincinnati, Cincinnati, Ohio, United States of America
Eileen King
Affiliation:
Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, United States of America
Javier Gonzalez del Rey
Affiliation:
Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, United States of America
Richard Ittenbach
Affiliation:
Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, United States of America
Bradley Marino
Affiliation:
Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, United States of America
*
Correspondence to: J. Daily, MD, The Heart Institute, Cincinnati Children’s Hospital Medical Center, 3333 Burnet Avenue MLC, Cincinnati, OH 45229, United States of America. Tel: 513 636 4432; Fax: 513 636 3952; E-mail: joshua.daily@cchmc.org.
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Abstract

Objectives

Parental understanding of their children’s heart disease is inadequate, which may contribute to poor health outcomes. The purpose of this study was to determine what parental knowledge is important in the care of children with heart disease from the perspective of parents, nurses, and physicians.

Methods

Focus groups were formed with parents of children with single ventricle congenital heart disease (CHD), biventricular CHD, and heart transplantation, and with nurses and physicians who provide care for these children. A nominal group technique was used to identify and prioritise important parental knowledge items and themes. The voting data for each theme were reported by participant type – parent, nurse, and physician – and patient diagnosis – single ventricle CHD, biventricular CHD, and heart transplantation.

Results

The following three themes were identified as important by all groups: recognition of and response to clinical deterioration, medications, and prognosis and plan. Additional themes that were unique to specific groups included the following: medical team members and interactions (parents), tests and labs (parents), neurodevelopmental outcomes and interventions (physicians), lifelong disease requiring lifelong follow-up (physicians and nurses), and diagnosis, physiology, and interventions (single ventricle and biventricular CHD).

Conclusions

Parents, nurses, and physicians have both common and unique views regarding what parents should know to effectively care for their children with single ventricle CHD, biventricular CHD, or heart transplantation. Specific targeted parental education that incorporates these findings should be provided to each group. Further development of questionnaires regarding parental knowledge with appropriate content validity is warranted.

Keywords

Parental knowledgechildrenparentsCHDfocus groups
Type
Original Articles
Information
Cardiology in the Young , Volume 26 , Issue 1 , January 2016 , pp. 61 - 69
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Copyright
© Cambridge University Press 2015 

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