Abstract
Introduction
The purpose of this study was to describe the cost burden of congenital heart disease
(CHD) and the associated social impact as experienced by families.
Method
Qualitative methods were used to collect and interpret data. Semi-structured interviews
were conducted with parents of children with various degrees of CHD complexity and
socioeconomic status currently admitted for congenital heart surgery at a large tertiary
care regional center.
Results
The meaning of cost burden as defined by participants resulted in the emergence of
two major categories, lifestyle change and uncertainty. Cost was described beyond
monetary terms and as a result, data in each category were further clustered into
three underlying subcategories labeled financial, emotional, and family burden. The
child's disease complexity and parent's socioeconomic status seem to be linked to
higher levels of stress experienced in terms of finances, emotional drain, and family
member burden. Prenatal diagnosis was noted to trigger early discussion of financial
uncertainty, often resulting in altered personal spending prior to birth.
Discussion
The cost experienced by parents of children with complex CHD was described as both
life-changing and uncertain. Informing families of these types of additional stressors
may allow issues of finances to be considered early in the overall preparation of
caring for a child with complex CHD.
Key Words
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Biography
Jean Anne Connor, Director of Nursing Research, Cardiovascular Program, Children's Hospital, Boston, MA.
Biography
Nancy E. Kline, Director of Nursing Research, Department of Nursing, Sloan Memorial Kettering Hospital, New York, NY.
Biography
Sandra Mott, Director of Maternal Child Program, Department of Maternal and Child, William Connell School of Nursing, Boston College, Boston, MA.
Biography
Sion Kim Harris, Senior Survey Epidemiologist, Department of Pediatrics, Children's Hospital, Boston, MA.
Biography
Kathy J. Jenkins, Director of Program Patient Safety & Quality, Senior Associate, Department of Cardiology, Department of Cardiology, Children's Hospital, Boston, MA.
Article info
Publication history
Published online: January 06, 2010
Footnotes
Conflicts of interest: None to report.
Identification
Copyright
© 2010 National Association of Pediatric Nurse Practitioners. Published by Elsevier Inc. All rights reserved.
