AB1145-HPR From the World of Children to the World of Adults - A Qualitative Interview Study

Abstract

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. References Gigtforeningen. [online]. 2013 [Cited 2014 January 23]; Available from: 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 DOI 10.1136/annrheumdis-2014-eular.1455

Experiences of living with juvenile idiopathic arthritis: a qualitative systematic review

“…40,41,46,50 A range of qualitative methodologies were represented in the studies: four studies were identified as qualitative, 40,41,[50][51][52] two as grounded theory, 46,47 two as phenomenological, 45,49 and two as qualitative descriptive. 44,48 Details of characteristics of these included studies, including their specific phenomena of interest, are shown in Appendix III.…”

“…Dates of publication ranged from 2006 to 2020. 40,41,[44][45][46][47][48][49][50][51][52] Four studies (five papers) originated in the UK, 40,41,45,49,50 two in Canada, 44,48 two in Sweden, 46,47 one in Spain, 52 and one in the Netherlands. 51 A total of 143 patients and 47 parents participated across all studies.…”

“…40,41 The relevant chapter in the book was adapted from the journal article. The settings for the data collection included hospital clinics or meeting rooms, 40,41,44,46,48,49,51 patients' homes, 40,41,46,47 parents' workplaces, 40,41 video conference, 52 and by telephone. 40,41,46,50 A range of qualitative methodologies were represented in the studies: four studies were identified as qualitative, 40,41,[50][51][52] two as grounded theory, 46,47 two as phenomenological, 45,49 and two as qualitative descriptive.…”

“…Overall, patients trust doctors and seek help from them, although conflicts in the doctor-patient relationship have been reported. 44,47 It is a common theme in the literature that children with chronic diseases can feel frustrated with their health care providers 58,59 ; for example, Kynga ¨s et al reported that health care providers may be more concerned about the clinical rather than the emotional aspects of disease, such as depression and sadness. 58 Even when health care providers pay attention to patients' lived experiences, patients indicate they want more understanding and positive attitudes from health care providers.…”

“…However, in most cases, parents speak on behalf of their children when the children are either too young to speak for themselves or unwilling to communicate with doctors about their disease-related health conditions. 44 Nonetheless, it should be noted that parents cannot always play this role because when patients grow up, they have to communicate independently and manage their own illness and daily lives, which is the ultimate goal of parents and health care providers. Other published studies also support these findings [67][68][69][70] ; for instance, research on daily life of children with JIA illustrated the disadvantages of overprotection, such as limited participation in sports and activities and unfair access to information sharing.…”