proof-of-concept study of 'jia toolbox' for children and young people (cyp) with juvenile idiopathic arthritis (jia)

Conditions: Rheumatologic Disease

Summary: this project aims to further develop and conduct a 'real-world' proof-of-concept assessment of a suite of three products, known as the 'jia toolbox', that collectively aim to improve cyp's independence and functional ability 'jia toolbox' targets key unmet needs identified by stakeholders during our previous work. each prototype (appendix1) addresses a specific unmet need: 1. prototype-1: pain which stops cyp doing the things they love; 2. prototype-2: difficulty for healthcare professionals (hcps) to motivate cyp to do stretches; 3. prototype-3: communication difficulties between teachers and cyp the project is at a stage where the prototypes need their potential value assessed through a proof-of-concept study. a co-design approach, involving cyp with jia, their parents, their teachers and hcps, will be maintained throughout to ensure the outcomes are meaningful. this study will begin with co-design workshops to develop the current prototypes further, followed by a qualitative study assessing the real-world usability, acceptability and potential impacts of these prototypes; testing them with real users in their homes. the project aims to make a positive contribution to cyp with jia by improving their independence and functional ability through co-designed therapeutic interventions.

juvenile idiopathic arthritis (jia) is a long-term rheumatic disease affecting approximately 15,000 children and young people (cyp) in the uk \[1\] with 1,000-1,500 new diagnoses/year. jia causes ongoing/long-term joint inflammation, pain, and stiffness, making everyday activities difficult. jia has been shown to impact physical, social, emotional, and educational development. products exist to aid tasks such as writing, washing, and eating. however, a survey we conducted in 2018 showed that cyp with jia find these products difficult to use, stigmatising, and patronising. furthermore, these products often neglect to consider the wider stakeholder network and how their support, or lack of it, impacts the child's overall wellbeing. this project aims to further develop and conduct a 'real-world' proof-of-concept assessment of a suite of three products, known as the 'jia toolbox', that collectively aim to improve cyp's independence and functional ability 'jia toolbox' targets key unmet needs identified by stakeholders during our previous work. each prototype (appendix1) addresses a specific unmet need: 1. prototype-1: pain which stops cyp doing the things they love; 2. prototype-2: difficulty for healthcare professionals (hcps) to motivate cyp to do stretches; 3. prototype-3: communication difficulties between teachers and cyp the project is at a stage where the prototypes need their potential value assessed through a proof-of-concept study. a co-design approach, involving cyp with jia, their parents, their teachers and hcps, will be maintained throughout to ensure the outcomes are meaningful. this study will begin with co-design workshops to develop the current prototypes further, followed by a qualitative study assessing the real-world usability, acceptability and potential impacts of these prototypes; testing them with real users in their homes. the project aims to make a positive contribution to cyp with jia by improving their independence and functional ability through co-designed therapeutic interventions.

Eligibility criteria:
inclusion criteria: * aged 7- 16 years (minimum age is 7 to ensure participants can adequately engage with the prototypes and describe their experience) * diagnosis of jia * currently managed within sch rheumatology service * fluent in verbal and written english * access to a computer with an internet connection to facilitate virtual co-design workshops due to the covid-19 pandemic exclusion criteria: * aged \ 16 years * non-fluent in verbal and written english * diagnosis of autistic spectrum disorder (asd) * children with medically unexplained pain, pain amplification syndromes or other pain disorder * co-existing joint or muscle disorder other than jia