Grant: CIHR Fellowship

Having a child diagnosed with heart failure (HF) is a distressing and terrifying experience for parents. HF is a condition where the heart is unable to pump enough blood to the body, leading to many different symptoms and eventually death. No statistics are available to understand the burden children's HF places on the Canadian health care system, but is a factor in approximately 11, 000 - 14, 000 hospital admissions within the Unites States each year. Health care providers in this field have jointly developed guidelines which has improved the outcomes for children with HF, and more children with HF are now able to be discharged home than ever before. However, discharge can be a stressful event as parents undergo a huge learning curve from the amount of new information about daily management (e.g., daily fluid intake, special diet, management of multiple medications, weight monitoring and symptom recognition). It is known that when parents have a gap in knowledge about their child's health condition, they will often search the internet for information. However, little is known about what educational tools exist for parents, their learning needs and experiences, and what platforms best help them learn best about their child's HF. The purpose of my research is to: 1) understand and evaluate what educational tools exist for parents about childhood HF, 2) identify important parent knowledge needs and experiences while caring for a child with HF, and use those findings to co-create and refine an educational tool about children's heart failure that targets parent audiences. This novel arts-based knowledge translation tool will be the first tool to combines guidelines, research evidence about parent experience, health care provider opinion, and most importantly, parent feedback. This tool will improve outcomes of children burdened by HF within the Canadian health care system by empowering their parents with research knowledge to make better informed decisions.