Parents' Perceptions of Health Care Professionals' Support in the Transition of their Adolescent with Rheumatic Disease from Pediatric to Adult Care

Abstract

Youth with a chronic disease must prepare for the transition from pediatric to adult healthcare. Parents play a vital role in supporting their youth through the transition process. Using Appreciative Inquiry, interviews were conducted with 9 parents of 6 youth with chronic rheumatic disease at varying stages of transition. Their experiences of caring for their youth, their role in promoting independence and self-management, and the support they have received from Health Care Professionals (HCPs) in the transition process were examined. Strategies to enhance parental support through the transition process were explored. From the data, four predominant themes emerged: 1) loss of control, 2) parents desire for knowledge and tools to enhance their involvement in transition, 3) the need for an inclusive, formal, defined transition process and 4) sustainability of transition practice changes through a restructuring of services and provision of education and skills for HCPs.