Home Care for Mended Hearts

CHAoC Project Commitment - $70,000


Primary Investigator: Sandra Staveski PhD, RN, CPNP-AC
Co-Investigators: Nicolas Madsen, MD, Sam Hanke, MD, and Barbara Giambra, PhD, RN, CPNP
Funding Timeline: 2016-2017

Children with a congenital heart disease/defect (CHD) have a lifelong condition that at different stages often requires surgery or cardiac catherizationor simply the regular and routine expertise of a cardiologist. Parents of these children are keenly motivated to provide the best possible care for their child, but require specific and reliable education to do so. In fact, the consequences of parents being ill-prepared for home care are many, including (but not limited to) medication errors, hospital readmission, suboptimal weight gain, inappropriate avoidance or participation in activities, and potentially, death. The Home Care for Mended Hearts program is directly aimed at studying and improving this vulnerability by developing a structured home care education tool for parents of children with CHD and their healthcare team. The application of this tool begins at the child/parent’s first introduction to the Cincinnati Children’s Heart Institute and continues through ongoing outpatient follow-up visits. The tool is being co-created by parents, clinicians, and the Live Well Collaborative through the generous support of CHAoC. We hope that this home care education tool, which includes individualized teaching, visually appealing documents including pictograms for parents with low literacy, and electronic training materials, will help transform the way we prepare children and parents for a lifetime of CHD care at home.