Can a Medical Specialty Camp Become a Venue of Providing Reinforcement Preparation Education Regarding Transition From Pediatric to Adult Healthcare?

Abstract

There is limited research available regarding preparation education for adolescents with a congenital heart defect (CHD) approaching the transition from pediatric to adult healthcare. Medical specialty camps have been proven as beneficial for children and adolescents with CHD in providing opportunities for the development of interpersonal relationships between individuals with similar diagnoses and experiences. Using individual interview techniques, the current study explored the perceptions of five young adults with CHD between the ages of 18 and 21 years who attended medical specialty camps in the past. Participants discussed their i) experiences living with a complex CHD and resources used ii) knowledge regarding diagnosis and treatment adherence iii) experiences in communicating with doctors and adhering to doctors’ orders iv) opinions regarding experiences in the adult clinic v) parental role in medical care vi) thoughts regarding the benefits of educational experiences focusing on the transition of care during a medical specialty camp. Participants were in various stages in the transition process, with none fully transitioned into independent adult CHD care. Though they identified minimal levels of anxiety regarding the transition, all participants perceived preparation education as beneficial. They unanimously stated that a medical specialty camp would be an appropriate venue for providing transition education. Results showed that preparation education should tailor to the specific anxieties reported by the adolescents receiving the preparation. Based on participant feedback, a transition preparation journal activity was developed and trialed as a quality improvement program at a medical specialty camp. Further research is indicated to assess the usefulness of this education intervention.