Establishing clinical networks to deliver optimal care for children and young people with Juvenile Idiopathic Arthritis: guidance for medical professionals

Abstract

Background: Clinical networks are evolving across the United Kingdom (UK), as a means to address inequities in access to specialist care for children and young people with Juvenile Idiopathic Arthritis (JIA). There is recognition that establishing clinical networks, and educating and training health professionals has been challenging. This study therefore explored the experiences of those involved to understand this area further. The aim of this study was to produce an educational framework to guide medical professionals in this process. Methods: Focus groups and one-to-one interviews were used to explore experiences of health professionals, young people with JIA and their families. Participants were recruited from paediatric and adolescent rheumatology specialist centres, clinical networks and charities across the UK. Data was analysed using coding, memoing and mapping techniques to identify issues and features relating to the support required. The findings provided the content for an educational framework. Results: Seventy-two participants took part in 9 focus groups and 12 one-to-one interviews. Five tertiary centres and their networks were studied, 4 in England and 1 in Scotland. Networks were constantly evolving and no one network or ‘link’ within a network was the same. Different network structures gave rise to different roles and responsibilities, educational needs and training opportunities. Crucially professional and organisational boundaries have impeded the effective implementation of organisational change. Conclusions: This thesis has documented key issues and mapped out the support required for medical professionals establishing and maintaining clinical networks to deliver optimal care for children and young people with JIA. The support required is complex and context specific. There are many questions still to be answered. However, I hope my observations, theories and educational framework development provides the basis for future research and begins to facilitate change to improve care for children and young people with JIA.