Enduring Hearts is funding a team from Alberta, Canada, to try out a new way to help our pre-teens and teens safely grow up. Pediatric heart transplant recipients deal with considerable psychological and social stress from living with a chronic disease that requires daily medications and continuous medical supervision. When these patients do not adhere to treatment, they may be admitted to the hospital more often, experience organ rejection or graft loss, and even death. To lessen these treatment-related burdens, new research-based practices promoting self-management and social support should be sought. The iPeer2Peer program is one such intervention that could improve patient-care management, adherence with treatment, social isolation, and other health outcomes. iPeer2Peer is an online peer support mentorship program that would improve access to health information and social support.

Pediatric heart transplant recipients deal with considerable psychological and social stress from living with a chronic disease that requires daily medications and continuous medical supervision. When these patients do not adhere to treatment, they may be admitted to the hospital more often, experience organ rejection or graft loss and even death. To lessen these treatment-related burdens, new research-based practices promoting self-management and social support should be sought. The iPeer2Peer program is one such intervention that could improve patient-care management, adherence with treatment, social isolation and other health outcomes. iPeer2Peer is an online peer support mentorship program that would improve access to health information and social support. The proposed trial testing the iPeer2Peer program would evaluate the way the program is implemented to make sure it is feasible, adoptable, acceptable, and appropriate. The program will also be evaluated to see if it improves participant self-management skills, adherence with treatment, quality of life, social support, stress and coping. This research has a strong focus on involving patients, improving their health, and making it easier to access self-management and social support interventions. The results of this research have the ability to improve the lives of children and youth with a heart transplant.

The iPeer2Peer Program was developed by the iOUCH research team at The Hospital for Sick Children to help teenagers with chronic disease better manage their symptoms. When children become teenagers, they start making more decisions about their lives and their health. This is called self-management. Most young people do not learn how to manage their disease or get the support they need to be able to do so. Many have also never met another person with the same disease. Peer support could help meet this need. Providing face-to-face peer support using the Internet is a new way to make self-management education and support available to teenagers with chronic disease.

The Anthony lab is currently conducting a phased research project to adapt the iPeer2Peer program for adolescents and young adults who are candidates for or recipients of a solid-organ transplant.

The burden of disease and cost of pediatric solid organ transplantation demand convenient, acceptable, and accessible methods for patients to benefit from evidence-based self-management and peer support practices. iPeer2Peer is a successfully established peer support mentorship program that has been tested in multiple disease populations. A needs assessment was conducted to explore the perceived self-management and peer support needs of transplant patients and determine the necessary adaptations required to modify the iPeer2Peer program for a transplant population.