With congenital heart disease (CHD) being the most prevalent congenital defect globally, a recent article published in the Journal of Pediatric Health Care aimed to describe parents’ perspectives on financial stressors related to having a child with CHD. The study, based on a qualitative approach using a national sample, unveiled five distinct financial stressors experienced by parents of children and emerging adults with CHD. This research marks the first comprehensive exploration of these challenges, shedding light on critical issues families face in managing the financial aspects of CHD care.
The study identified vital stressors as being perpetually worried about health insurance, facing the dilemma of not being able to access need-based financial assistance, struggling to balance work, worrying over having an emerging adult with CHD and constant constraints because of financial needs. Researchers called for enhanced collaboration between health care providers and insurance companies to ensure that patients with coexisting conditions can receive insurance and also facilitate the expansion of insurance coverage to those older than 25 years of age.
Current government programs utilize gross household income as a primary indicator for determining financial assistance for families of children with CHD. However, the study highlights the limitations of this approach, noting that it fails to consider critical factors such as household debt and additional expenses associated with caring for children with CHD.
In addition, the study findings revealed the impact of emotional strain on family relationships, particularly marital strain and family dynamics among siblings and extended family members. The findings underscore the critical need to support parents’ psychosocial and overall social well-being.
“We must translate families’ experiences from merely anecdotal to data and demonstrate the need for change and improved support. The truth is that many families are financially, emotionally and socially impacted by raising and loving a child with complex congenital heart disease and other rare diseases,” said Jessica Lindberg, Founder of the Ethan Lindberg Foundation and article coauthor.
The article “Financial Stressors for Parents of Children and Emerging Adults with Congenital Heart Disease: A Qualitative Study” was published in the July/August edition of the Journal of Pediatric Health Care and can be accessed here.
July 23, 2024
