From childhood to adult life with juvenile idiopathic arthritis (JIA): A pilot study

Abstract

Purpose. To explore the experiences of the health service provision in the transition process from childhood to adult life from the perspective of young patients with juvenile idiopathic arthritis (JIA) and health professionals working in this field.

Method. Two groups of young persons with JIA and two groups of health professionals were interviewed in focus groups. The data were analysed according to approved guidelines for qualitative analysis.

Results. ‘Capability to lead a meaningful adult life’ emerged as a core category; capability as a consequence of ‘being enabled’ from the youths' point of view, and ‘enabling the young patients’ from the health professionals’ perspective. Preparation for the transition and transfer process was perceived as inadequate and seemed dependent on enthusiastic health professionals both in the children's and adult wards. Suggestions for formal improvements were required in four main areas.

Conclusion. This pilot study has identified inadequacies in the transition management provided for young people with JIA. Acceptance of the young persons as active participants in their own transition process might strengthen these young persons' experience of an autonomous identity and enable participation socially and in society, thus enhancing the ability to achieve a meaningful adult life. Further investigations should focus on adults living with JIA, how they lead their lives physically and psychosocially.

Keywords:

• Juvenile idiopathic arthritis
• adolescent
• adult
• transition
• empowerment