POS0154-HPR\u2005FACTORS FACILITATING THE SELF- AND SHARED-MANAGEMENT OF JIA BY CHILDREN, YOUNG PEOPLE, THEIR FAMILIES, AND PROFESSIONALS INVOLVED IN THEIR CARE: A REALIST EVALUATION

Abstract

Juvenile idiopathic arthritis (JIA) is a long-term condition, often requiring some element of lifelong management. Therefore, it is logical that children and young people are empowered to become competent at self-managing their health and wellbeing, while families are supported in their shared-management role during childhood, relinquishing control at age- and developmentally appropriate periods in their child’s development. However, there are limited theoretical foundations underpinning optimal self- and shared-management support for children, young people and families living with JIA.To explain the factors facilitating the self- and shared-management of JIA by children, young people, and their families, with professional support from healthcare professionals, third sector organisations, and education professionals.Guided by the Individual and Family Self-management Theory and the Shared Management Model, a three-stage realist evaluation was undertaken: 1) initial JIA self- and shared-management question theories were elicited from a document review, integrative review, and stakeholder insights [1]; 2) seven initial question theories were tested using qualitative research methods with 20 participants (young people, families, healthcare professionals, education professionals, and third sector representatives); 3) analysis of findings using a theory-driven approach to thematic analysis, in order to identify demi-regularities to extend or refute the initial question theories. The analysis drew on deductive, inductive, and retroductive reasoning.There were six refined JIA self- and shared-management question theories: 1) meaningful and bespoke self-management support across the life course for children and young people with JIA; 2) recognised and valued shared-management support for the families of children and young people with JIA, with autonomy in mind; 3) individual healthcare plans as a shared management communication tool to facilitate optimal management of JIA; 4) consistent recognition, value, and encourage of self- and shared-management support from the paediatric rheumatology multi-disciplinary team and associated professionals; 5) child, young-person, and family-focused paediatric rheumatology care and support services across the lifecourse; and 6) bespoke and inclusive approaches by education providers to enable children and young people with JIA to feel safe, supported, and able to fulfil their potential.There is an increasing recognition of the importance of self- and shared-management of JIA. However, there is a lack of an overall, cohesive approach to self- and shared-management between healthcare providers, education providers, and the third sector. Findings from this study illuminate the factors facilitating JIA self- and shared-management at individual, interpersonal, institutional and infrastructural levels. Further work is required to empirically test these refined question theories with interventions designed to enhance JIA care, education, and support.[1]Stones et al. (2020). A realist approach to eliciting the initial programme theories for the self- and shared-management of juvenile idiopathic arthritis by children, young people, families and professionals involved in their care. Pediatric Rheumatology 18(Suppl 2): O062.The authors thank all of the participants who helped to shape the findings of this study. This work formed part of a PhD study funded by the University of Leeds.Simon Stones Speakers bureau: Janssen, Consultant of: Parexel, Envision Pharma Group, 67 Health, On The Pulse Consultancy, Veronica Swallow: None declared, Linda Milnes: None declared