Please use this identifier to cite or link to this item: http://hdl.handle.net/1893/28317
Appears in Collections:Psychology Journal Articles
Peer Review Status: Refereed
Title: Self-management needs of Irish adolescents with Juvenile Idiopathic Arthritis (JIA): how can a Canadian web-based programme meet these needs?
Author(s): O'Sullivan, Grace
O'Higgins, Siobhan
Caes, Line
Saetes, Sophia
McGuire, Brian E
Stinson, Jennifer
Keywords: Juvenile arthritis
Adolescence
Self-management
Online intervention
Needs assessment
Issue Date: 31-Dec-2018
Citation: O'Sullivan G, O'Higgins S, Caes L, Saetes S, McGuire BE & Stinson J (2018) Self-management needs of Irish adolescents with Juvenile Idiopathic Arthritis (JIA): how can a Canadian web-based programme meet these needs?. Pediatric Rheumatology Online Journal, 16 (1), Art. No.: 68. https://doi.org/10.1186/s12969-018-0287-0.
Abstract: Background Juvenile Idiopathic Arthritis (JIA) affects over 1000 children and adolescents in Ireland, potentially impacting health-related quality-of-life. Accessible self-management strategies, including Internet-based interventions, can support adolescents in Ireland where specialist rheumatology care is geographically-centralised within the capital city. This study interviewed adolescents with JIA, their parents, and healthcare professionals to (i) explore the self-management needs of Irish adolescents; and (ii) evaluate the acceptability of an adapted version of a Canadian JIA self-management programme (Teens Taking Charge: Managing Arthritis Online, or TTC) for Irish users. Methods Focus groups and interviews were conducted with Irish adolescents with JIA (N = 16), their parents (N = 13), and Irish paediatric healthcare professionals (HCPs; N = 22). Adolescents were aged 12–18 (Mage = 14.19 years), and predominantly female (62.5%). Participants identified the needs of adolescents with JIA and evaluated the usefulness of the TTC programme. Data were analysed using a thematic analysis approach. Results Five themes emerged: independent self-management; acquiring skills and knowledge to manage JIA; unique challenges of JIA in Ireland; views on web-based interventions; and understanding through social support. Adolescents acknowledged the need for independent self-management and gradually took additional responsibilities to achieve this goal. However, they felt they lacked information to manage their condition independently. Parents and adolescents emphasised the need for social support and felt a peer-support scheme could provide additional benefit to adolescents if integrated within the TTC programme. All participants endorsed the TTC programme to gain knowledge about JIA and offered suggestions to make the programme relevant to Irish users. Conclusions There is scope for providing easily-accessible, accurate information to Irish families with JIA. The acceptability of adapting an existing JIA self-management intervention for Irish users was confirmed.
DOI Link: 10.1186/s12969-018-0287-0
Rights: This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

Files in This Item:
File Description SizeFormat 
Self-management needs of Irish adolescents.pdfFulltext - Published Version834.72 kBAdobe PDFView/Open



This item is protected by original copyright



Items in the Repository are protected by copyright, with all rights reserved, unless otherwise indicated.

If you believe that any material held in STORRE infringes copyright, please contact library@stir.ac.uk providing details and we will remove the Work from public display in STORRE and investigate your claim.