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.

Registration: PROSPERO International Prospective Register of Systematic Reviews 2018: CRD42018100450.

Patient or public contribution: Patient and public involvement was not explicit in this review. However, three authors provided a patient perspective on the self-management of arthritis and autoimmune disease.

Keywords: lived experience; meta-synthesis; qualitative evidence synthesis; rheumatoid arthritis; self-management; systematic review.