Renegotiating dimensions of the self: A systematic review and qualitative evidence synthesis of the lived experience of self-managing rheumatoid arthritis

Abstract

Background: As chronic illnesses, such as rheumatoid arthritis (RA), place an increased burden on health-care systems, the ability of individuals to self-manage these diseases is crucial. Objective: To identify and synthesize the lived experience of self-management described by adults living with RA. Design: A systematic search of five electronic databases (MEDLINE, CINAHL, EMBASE, PsycINFO and ASSIA) was undertaken to identify relevant studies. Data were extracted and quality-assessed using CASP guidelines. A meta-synthesis was conducted based on Thomas and Harden's thematic synthesis approach. Results: The search identified 8423 publications. After removing duplicates, 6527 records remained of which 32 studies met the inclusion criteria. Quality of studies was moderate to high, yet a considerable lack of reflection on researcher bias was evident. Our analysis identified 28 dimensions of self-management RA across six domains: (a) cognitive-emotional, (b) behavioural, (c) social, (d) environmental, (e) physical and (f) technological. Cognitive-emotional experiences dominated the analysis. Renegotiating ‘the self’ (self-concept, self-esteem, self-efficacy) was a key focus of self-management among individuals with RA. Conclusion: Our findings highlight the focus of ‘the self’ as a central concern in the self-management of RA. Standardized self management programmes may primarily focus on disease management and daily functioning. However, we suggest that personal biographies and circumstances should move to the fore of self-management support.