ABSTRACT
Background: Juvenile Idiopathic Arthritis (JIA) is a heterogenous group of autoimmune disorders characterised by chronic joint inflammation, diagnosed in around 1 in 1,000 children and young people (CYP) under the age of 16. Delays in diagnosis are common [1], awareness is low, and paediatric rheumatological conditions have a considerable impact on young people and their families [2]. A lack of understanding amongst families of newly-diagnosed children leads to uncertainty and anxiety. Objectives: This patient and parent-led project developed a resource pack for parents of CYP newly-diagnosed with JIA, to provide information and support. Following a pilot, feedback from recipients was collated and analysed to help improve future provision. Methods: A young person with JIA identified the need for direct family support. Juvenile Arthritis Research (a UK charity) developed a unique pack of support information, containing resources for both children and their families -called A Little Box Of Hope. This included information about JIA and support services available for families, as well as Kipo (a children's book about JIA) and accompanying finger puppet. Clinicians at one paediatric rheumatology centre provided information about the packs to newly diagnosed families, who then requested a free box to be posted to them. Following an initial pilot study, recipients were invited to complete a short online questionnaire and provide feedback to allow refinement of the provision. Results: Respondents were asked a series of questions, each on a scale of 1-5. Every respondent gave a score of 5 in response to What do you think of the idea of A Little Box Of Hope Every parent of children under ten years old gave a score of 5 for every item when asked How useful is each item in your Little Box Of Hope Respondents also gave free-text comments: ∗ It was very well thought out and I felt supported ∗ I know so much more about JIA now than I did before. I cannot thank you enough. ∗ It was extremely useful and made me feel supported during a very stressful time and this enabled me to support my son more effectively. ∗ It made my daughter feel less alone. Some parents of older children felt that some information specifically for teens would be useful, and a Teen pack is being developed. Conclusion: Recipients of A Little Box Of Hope have found the information useful and feel supported. Following the pilot study, we have developed My JIA, a booklet reviewed by a multi-disciplinary clinical team, with comprehensive information for families affected by JIA. A Teen pack, for children aged around 10 years or older, is being developed to provide targeted support to this group. The COVID-19 pandemic has adversely affected access to healthcare services, increasing the need for remote parent-and charity-provided support through A Little Box Of Hope. As such, we intend to expedite the roll-out of the project across the country building on the success of the pilot project.