Innovative approaches to the self- and shared- management of arthritis by children, their families and professionals: a realist approach

Background: Juvenile idiopathic arthritis (JIA) is a complex long-term condition requiring lifelong management. Children and young people (CYP) should be empowered to self-manage their health and wellbeing (H&W) from diagnosis, while families should be supported in their shared-management role. Self- and shared-management (SSM) interventions can be used to develop SSM capacity; however, few studies have explored SSM in this population. Aim: To explore how SSM of JIA can be promoted across the lifecourse by CYP, families, and professionals involved in their healthcare, wellbeing, and education. Methods: Using a realist approach and underpinned by the individual and family self-management theory, evidence syntheses and a qualitative study were undertaken to identify, test, and refine a series of question theories promoting SSM of JIA. Twenty stakeholders were interviewed using a teacher-learner cycle approach. Data were analysed using hybrid deductive-inductive thematic analysis, and were integrated into a framework promoting SSM of JIA. Results: Six refined question theories outlining the mechanisms by which SSM of JIA is likely to transpire, and the different contexts under which interventions achieve their desired outcomes, were developed and assimilated into a new, JIA-SSM framework. Within the framework, four levels of context related to SSM were identified, at an individual and interpersonal level of CYP, families and professionals; and at institutional and infrastructural levels across health and social care, education, and voluntary sectors. Individual healthcare plans can also act as shared-management tools to facilitate communication between CYP, families, and professionals across healthcare, wellbeing, and education. Conclusions: The JIA-SSM framework encourages a shift towards a multi-intervention, multi-disciplinary, multi-agency approach which works with CYP and families in equipping them with the knowledge, skills, and behaviours to competently manage their H&W. Further research is recommended to apply and validate this framework in practice, in order to aid future design, delivery, evaluation, and implementation of interventions promoting SSM of JIA.