CO-DESIGNING IN PAEDIATRIC RHEUMATOLOGY: RE-IMAGINING THE FIRST 100 DAYS OF JUVENILE IDIOPATHIC ARTHRITIS CARE IN PARTNERSHIP WITH PATIENTS AND FAMILIES

Abstract

Aim: To describe the engagement process and preliminary outcomes from a major co-design project with patients and families of children and young people (CYP) with JIA at Queensland Children's Hospital. Methods: Health service organisations in Australia are mandated by the NSQHS Standards to co-design care with consumers, yet true examples of co-design remain rare. Over a 12 months period from November 2021 to November 2022, we partnered with patients and families to redesign their early experiences of care following diagnosis with JIA. Our team consisted of a Paediatric Rheumatologist, a project officer, an academic designer and a remunerated consumer-lead. A range of established and innovative methods were used to engage with consumers: these include Experience- Based Co-design (EBCD) methods, interviews, workshops, cultural probes, diarising, role play, photo journals, waiting room engagement activities and children's picture books. Evaluation tools were selected to reflect both the success of the service re-design interventions, and the acceptability of the co-design process. Results: Patients and families from a broad range of backgrounds, including Priority Populations, responded enthusiastically to participation in the project. Key themes that emerged include: the stress created by diagnostic delays; the impact of JIA diagnosis on the broader family unit; the emotional and mental health sequelae of diagnosis; the challenges of navigating school supports; procedural anxiety and trauma; as well as specific feedback about information resources. Over a series of workshops, solutions were codesigned with families and other stakeholders (e.g. Department of Education), creating a suite of bespoke, family-centred resources. Final project evaluation will follow the full implementation of this new care model. Conclusion: Families with CYP with JIA were enthusiastic participants in the co-design process; successful partnership between families, healthcare workers and external stakeholders allowed the development of a more family-centric model of early JIA care.