Self-management needs of Irish adolescents with Juvenile Idiopathic Arthritis (JIA): how can a Canadian web-based programme meet these needs?
McGuire, Brian E
Local subject classificationARTHRITIS
MetadataShow full item record
AbstractJuvenile 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. 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 (M 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. 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.
The following license files are associated with this item:
Except where otherwise noted, this item's license is described as Attribution-NonCommercial-NoDerivs 3.0 United States
- Jointly managing arthritis: information needs of children with juvenile idiopathic arthritis (JIA) and their parents.
- Authors: Stinson JN, Feldman BM, Duffy CM, Huber AM, Tucker LB, McGrath PJ, Tse SM, Hetherington R, Spiegel LR, Campillo S, Benseler S, Gill N, White ME, Baker N, Vijenthira A
- Issue date: 2012 Jun
- Usability testing of an online self-management program for adolescents with juvenile idiopathic arthritis.
- Authors: Stinson J, McGrath P, Hodnett E, Feldman B, Duffy C, Huber A, Tucker L, Hetherington R, Tse S, Spiegel L, Campillo S, Gill N, White M
- Issue date: 2010 Jul 29
- The iPeer2Peer Program: a pilot randomized controlled trial in adolescents with Juvenile Idiopathic Arthritis.
- Authors: Stinson J, Ahola Kohut S, Forgeron P, Amaria K, Bell M, Kaufman M, Luca N, Luca S, Harris L, Victor C, Spiegel L
- Issue date: 2016 Sep 2
- Asking the experts: exploring the self-management needs of adolescents with arthritis.
- Authors: Stinson JN, Toomey PC, Stevens BJ, Kagan S, Duffy CM, Huber A, Malleson P, McGrath PJ, Yeung RS, Feldman BM
- Issue date: 2008 Jan 15
- Developing and Evaluating JIApp: Acceptability and Usability of a Smartphone App System to Improve Self-Management in Young People With Juvenile Idiopathic Arthritis.
- Authors: Cai RA, Beste D, Chaplin H, Varakliotis S, Suffield L, Josephs F, Sen D, Wedderburn LR, Ioannou Y, Hailes S, Eleftheriou D
- Issue date: 2017 Aug 15