AB1411-HPR THE SELF- AND SHARED-MANAGEMENT OF PAEDIATRIC-ONSET RHEUMATIC AND MUSCULOSKELETAL DISEASES BY CHILDREN, YOUNG PEOPLE AND THEIR FAMILIES: INITIAL FINDINGS FROM A THEORY-GLEANING PROCESS WITH PATIENT ORGANISATION REPRESENTATIVES

Abstract

Background Encouraging children and young people (CYP) with rheumatic and musculoskeletal diseases (RMDs) and their families to adopt self-management behaviours from the point of diagnosis is likely to positively influence the long-term health and wellbeing of CYP. However, there is limited evidence of such interventions targeted at CYP and families. Objectives Therefore, the aim of this study was to identify What works, for whom, in what circumstances, and why. Methods The study was based on the logic of realist evaluation and the Individual and Family Self-Management Theory. Realist evaluation is a recognised model of theory-driven evaluation which enables an in-depth appreciation of how complex health interventions may or may not work in real-world settings. In this study, a realist evaluation was undertaken using qualitative research methods to explore and refine theories regarding self- and shared-management interventions. The realist evaluation began with a set of initial programme theories, which were initially tested through interviews with one group of stakeholders involved in providing self- and shared-management support. Interviews were transcribed intelligent verbatim and data were analysed in NVivo using a realist logic of analysis to identify contextual influencers, interventions mechanisms and outcomes. Results In order to refine and consolidate theories about the self- and shared-management of RMDs by CYP and their families, theory was gleaned from patient organisation representatives with experience of supporting CYP and families. Contextual influencers discussed included the characteristics of: i) individual CYP living with RMDs; ii) the family dynamic; iii) peer and social interaction among both CYP and families; iv) the educational environment; and v) Organisational processes and structures. Patient organisation representatives highlighted the family dynamic and navigating organisation processes and structures as key influencers on CYPs willingness and ability to begin their self-management journey in an age- and developmentally-appropriate manner. Conclusion Concepts gleaned during the first phase of the study, particularly around the influence of family dynamic, will be further tested, refined, and consolidated with other groups of stakeholders, including: CYP with RMDs; families; healthcare professionals from the paediatric rheumatology multi-disciplinary team; school staff; and patient organisation representatives. In time, it is anticipated that the findings will form a programme specification detailing what works, for whom, in what circumstances, and why with regards to the self- and shared-management of paediatric-onset RMDs.