Patient Preference and Adherence (Dec 2018)
A qualitative study on the educational needs of young people with chronic conditions transitioning from pediatric to adult care
Abstract
Maxime Morsa,1 Pierre Lombrail,1,2 Bernard Boudailliez,3,4 Cécile Godot,5 Vincent Jeantils,6 Rémi Gagnayre1 1Laboratory of Education and Health Practices (EA3412), Université Paris 13, Bobigny, Paris, France; 2Department of Public Health, Paris Seine St-Denis Hospital, AP-HP, Paris, France; 3Pediatric Department, Amiens University Hospital Center, Amiens, France; 4Medicine Faculty, University of Picardie Jules Verne, Amiens, France; 5Department of Endocrinology, Diabetology and Gynecology of Children and Adolescents, Necker Hospital, AP-HP, Paris, France; 6Infectious Diseases Unit, Jean Verdier Hospital, AP-HP, Paris, France Objectives: Although patient education is recommended to facilitate the transition from pediatric to adult care, a consensus has not been reached for a particular model. The specific skills needed for the transition to help in facilitating the life plans and health of young people are still poorly understood. This study explored the educational needs of young people with diverse chronic conditions during their transition from pediatric to adult care. Methods: Qualitative semi-structured interviews were conducted with 17 young people with chronic conditions. A thematic analysis was conducted to examine the data. Results: Five themes emerged from the data, identified through the following core topics: learning how to have a new role, learning how to adopt a new lifestyle, learning how to use a new health care service, maintaining a dual relationship with pediatric and adult care, and having experience sharing with peers. Conclusion: A shift in perspective takes place when the transition is examined through the words of young people themselves. To them, moving from pediatric to adult care is not viewed as the heart of the process. It is instead a change among other changes. In order to encourage a transition in which the needs of young people are met, educational measures could focus on the acquisition of broad skills, while also being person-centered. Keywords: transition, adolescence, chronic disease, pediatrics, patient education
