Abstract
Objective: The economic burden of pediatric illness and its social impact on families has not been described in the area of congenital heart disease (CHD). The purpose of this study was to describe the economic burden of CHD as experienced by families.
Methods: An exploratory inquiry using semi-structured interviews was conducted. A pruposive sampling technique was use to identify parents of children with varying CHD complexity and socioeconomic status (SES) admitted for congenital heart surgery at a tertiary care center. Complexity of CHD was approximated using the Risk Adjustment for Congenital Heart Surgery Method (RACHS-1). SES was estimated using Hollingshead's Four Factor Index Scale. Structured interviews guided by 6 questions focusing on the meaning of cost and the impact on social functioning on the family were conducted. Interviews lasted 45 minutes to 1 hour. All interviews were auditaped and transcribed verbatim. Data were numbered, sorted, and coded using NVIVO software. Three researchers independently examined the data to identify thematic categories.
Results: Of the 20 interviews, the meaning of cost resulted in the emergence of two themes, uncertainty and lifestyle change. Data could be further sorted into 3 underlying categories of financial, emotional and family burden. Inter-rater reliability was 91%. As a result of increased disease complexity, families seem to experience a high level of stress in terms of finances, emotional drain, and family member burden. Families who received a prenatal diagnosis verbalized economic burden as an early stressor and altered personal spending prior to birth. Perception of the economic impact of the child's condition was dependent on baseline SES.
Conclusion: Although the complexity of disease seems to increase economic burden, timing of diagnosis and baseline SES were also noted to contribute to economic stress.
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Connor, J., Kline, N., Mott, S. et al. 69 Economic Burden of Congenital Heart Disease on Families. Pediatr Res 58, 366 (2005). https://doi.org/10.1203/00006450-200508000-00098
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DOI: https://doi.org/10.1203/00006450-200508000-00098