An update on JointCare project

A few years ago, a researcher – Daniela Ghio (from The University of Manchester) collaborated with CCAA and Teapot Trust to run a few activities to discuss managing JIA and what that is like for children and parents. The aim of these activities was to then to identify areas of self-management that research needs to focus on, to develop or put together resources and information that can provide that support for children and their families. So we ran art workshops, an online parent discussion group and put together a list of topics and questions which people had a chance to vote on and rate the priority of the topic.

We had 63 people voting and the results are in and the highest priority voted was overwhelmingly medication and side effects, looking for information about how to manage taking medication (e.g. methotrexate) and manage the side effects, followed by managing symptoms and flare ups and managing big emotions.

We are now working through what materials information about methotrexate is out there, what parents/caregivers and children will want to know and what that might look like. If you would like to know more or want to stay informed feel free to get in touch with daniela.ghio@manchester.ac.uk