Background Juvenile idiopathic arthritis (JIA) is a chronic disease affecting 1200 children in Denmark (1). Due to differences in the organization of the paediatric and adult setting, and a change in roles between the child and it's parents, the transition from the paediatric to the adult setting can be challenging for adolescents with JIA (2, 3). However, little is known about promotive factors for successful JIA transition since few studies have explored the patient perspective and perception in the field.
Objectives To explore the transition from the paediatric to the adult setting from the perspective of adolescents with JIA, and to discover important factors in successful transition.
Methods Data was conducted through qualitative interviews with three adolescents with JIA aged 19 – 23 years with a disease duration from 10 – 21 years. A semi structured interview guide was applied comprising the following terms: Overall experience of transition, preparation for the transition, cultural differences and the impression of and collaboration with doctors and nurses. The interviews were taped, transcribed verbatim and analysed using inductive content analysis.
Results Seven main categories described experiences with transition: The first encounter with the adult ward, The experience of an inadequate preparation for the transition, Differences between the child and adult world, The impression of and collaboration with doctors and nurses, Needs and challenges related to development, Parent participation and The development of responsibility and independence.
Conclusions Transition is challenging for adolescents due to an inadequate preparation and to cultural differences between the pediatric and adult setting. Data suggest that the gap can be minimized by a better preparation, including a gradual involvement of the adolescent in the process, planned start-up at the adult ward and appointment of contact persons.
Gigtforeningen. [online]. 2013 [Cited 2014 January 23]; Available from: http://www.gigtforeningen.dk/viden+om+gigt/diagnoser/b%C3%B8rnegigt
Shaw KL, Southwood TR, McDonagh JE. User perspectives of transitional care for adolescents with juvenile idiopathic arthritis. Rheumatology 2004 Jun;43(6):770-78.
Östlie IL, Dale Ö, Möller A. From childhood to adult life with juvenile idiopathic arthritis (JIA): A pilot study. Disabil Rehabil 2007 Mar;29(6):445-52.
Acknowledgements Thanks to the departmental management at the Department of Rheumatology AUH and Senior Reacher, Ph.D. Annette de Thurah for support and guidance.
Disclosure of Interest None declared