Hirani, S. P.

Mulligan, K.

Newman, S. P.

Wedderburn, L. R.

Whitelaw, P.

Rheumatology

City Research Online

              City, University of London Institutional RepositoryCitation: Whitelaw, P., Mulligan, K. ORCID: 0000-0002-6003-3029, Wedderburn, L. R., Hirani, S. P. ORCID: 0000-0002-1577-8806 and Newman, S. P. ORCID: 0000-0001-6712-6079 (2017). Evaluation of a Website for Parents of Children with Juvenile Idiopathic Arthritis (JIA) – WebParC. RHEUMATOLOGY, 56(S7), kex390.048. doi: 10.1093/rheumatology/kex390.048 This is the accepted version of the paper. This version of the publication may differ from the final published version. Permanent repository link:  http://openaccess.city.ac.uk/19698/Link to published version: http://dx.doi.org/10.1093/rheumatology/kex390.048Copyright and reuse: City Research Online aims to make research outputs of City, University of London available to a wider audience. Copyright and Moral Rights remain with the author(s) and/or copyright holders. URLs from City Research Online may be freely distributed and linked to.City Research Online:            http://openaccess.city.ac.uk/            publications@city.ac.ukCity Research OnlineEvaluation of a Website for Parents of Children with Juvenile Idiopathic Arthritis (JIA) – WebParC Pauline Whitelaw, Kathleen Mulligan,  Lucy R Wedderburn,  Shashivadan Hirani, Stanton Newman. Rheumatology, Volume 56, Issue suppl_7, 1 December 2017, kex390.048, https://0-doi-org.wam.city.ac.uk/10.1093/rheumatology/kex390.048  Published: 23 January 2018   Background: Childhood chronic illness not only affects the child, but can have an impact upon wider family members, particularly parents. Having a child with Juvenile Idiopathic Arthritis (JIA) presents parents with many challenges. Interventions that offer parents support to help them manage their child’s illness are therefore important(1); however attending face-to-face sessions may be difficult to fit into their lives, and staff resources may be scarce. An alternative approach is to provide online interventions which can be readily and easily accessed.  Aims: The aim of this trial is to evaluate the benefits to parents of having access to a specifically designed website for parents of children with JIA called “WebParC”, in combination with standard clinical care when compared to standard care alone.  Method:  Design: Multi-centred randomised-controlled trial (RCT).  Participants: Parents of children aged ≤12 years with newly diagnosed JIA (within 6 months of diagnosis), attending rheumatology clinics. Measures: Measures include parenting stress (the primary outcome), parent self-efficacy in managing their child’s illness, parent mood, and child health-related quality of life. Randomisation: Once baseline questionnaires are received, parents are randomised by household to either the intervention arm (access to website and standard care) or the control arm (standard care alone). Process Evaluation: A process evaluation will be conducted alongside the trial, and will be based on MRC guidance for conducting process evaluations of complex interventions(2).  Conclusions: The trial evaluates the effectiveness of the website when compared to standard care alone, and if effective, will be made freely available.  Results:  Progress: Currently, we are recruiting across 15 NHS sites in England. Baseline recruitment will continue until March 2017, with follow-up data being collected until March 2018. There are currently 52 participants recruited, and 24 randomised.  References 1. Eccleston C, Palermo TM, Fisher E, Law E Psychological interventions for parents of children and adolescents with chronic illness, Cochrane Database Syst Rev,  2012; 8:CD009660.  2. MRC Process Evaluation of complex interventions: a summary of Medical Research Council Guidance. 

Evaluation of a Website for Parents of Children with Juvenile Idiopathic Arthritis (JIA) – WebParC

Pauline Whitelaw

Kathleen Mulligan

Lucy R Wedderburn

Shashivadan Hirani

Stanton Newman

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48. Evaluation of a Website for Parents of Children with Juvenile Idiopathic Arthritis (JIA) – WebParC

http://openaccess.city.ac.uk/19698/3/Evaluation%20of%20a%20Website%20for%20Parents%20of%20Children%20with%20Juvenile%20Idiopathic%20Arthritis.pdf

Evaluation of a Website for Parents of Children with Juvenile Idiopathic Arthritis (JIA) – WebParC

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