iSMART v1.0

  • Research type

    Research Study

  • Full title

    Innovative approaches to the Self- and shared-Management of ARThritis by children, their families and professionals: A realist approach.

  • IRAS ID

    234475

  • Contact name

    Simon Stones

  • Contact email

    hcsrst@leeds.ac.uk

  • Sponsor organisation

    University of Leeds

  • Clinicaltrials.gov Identifier

    N/A, N/A

  • Duration of Study in the UK

    1 years, 2 months, 30 days

  • Research summary

    Juvenile idiopathic arthritis (JIA) is the most common type of rheumatic and musculoskeletal disease in children, affecting 1 in 1000 under the age of 16. As children with conditions like JIA mature, they should increasingly take on responsibility for self-managing their health, with shared-management support from their families and those involved in their care and education. Current gaps in the literature highlight the limited self- and shared-management support available for children with JIA. Therefore, the aim of this study is to develop a menu of ingredients to inform the future development of a self- and shared-management programme for children with JIA. Interviews and focus group discussions will be used with a variety of people to generate a 360-degree perspective, including: children with JIA, parents and carers, siblings, grandparents, healthcare professionals, teachers and JIA charities. The study uses a realist approach, digging deeper than some traditional interview styles, to look for: contexts (the environment surrounding children with JIA); mechanisms (what programmes could offer to children, and how they would respond); and outcomes (what effect do programmes have). The findings of our study will help the entire community to have a better understanding of what is likely to be effective, and what is not likely to be effective, in what contexts, when developing new programmes to help children with JIA.

  • REC name

    London - Surrey Research Ethics Committee

  • REC reference

    18/LO/1087

  • Date of REC Opinion

    10 Aug 2018

  • REC opinion

    Further Information Favourable Opinion