The meaning of cost for families of children with congenital heart disease

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.