Article| Volume 24, ISSUE 5, P318-325, September 2010

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The Meaning of Cost for Families of Children With Congenital Heart Disease

Published:January 06, 2010DOI:



      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.


      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.


      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.


      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.

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      Jean Anne Connor, Director of Nursing Research, Cardiovascular Program, Children's Hospital, Boston, MA.


      Nancy E. Kline, Director of Nursing Research, Department of Nursing, Sloan Memorial Kettering Hospital, New York, NY.


      Sandra Mott, Director of Maternal Child Program, Department of Maternal and Child, William Connell School of Nursing, Boston College, Boston, MA.


      Sion Kim Harris, Senior Survey Epidemiologist, Department of Pediatrics, Children's Hospital, Boston, MA.


      Kathy J. Jenkins, Director of Program Patient Safety & Quality, Senior Associate, Department of Cardiology, Department of Cardiology, Children's Hospital, Boston, MA.