Living life precariously with rheumatoid arthritis - a mega-ethnography of nine qualitative evidence syntheses

Abstract

Background: Rheumatoid arthritis is an autoimmune disease that causes joint inflammation. It affects around 400,000 people in the UK and 1 million adults in the USA. Given the appropriate treatment, many can have relatively few symptoms. It is therefore important to understand what it is like to live with rheumatoid arthritis and gain insight into peoples' decisions about utilising healthcare. The aims of this study were: (1) to bring together qualitative evidence syntheses that explore patients' experience of living with rheumatoid arthritis and (2) develop a conceptual understanding of what it is like to live with rheumatoid arthritis.

Methods: We used the methods of mega-ethnography. The innovation of mega-ethnography is to use conceptual findings from qualitative evidence syntheses as primary data. We searched four bibliographic databases from inception until September 2018 to identify qualitative evidence syntheses that explored patients' experience of rheumatoid arthritis.

Results: We identified 373 qualitative evidence syntheses, removed 179 duplicates and screened 194 full text studies. We identified 42 qualitative evidence syntheses that explored the experience of pain or arthritis and 9 of these explored the experience of rheumatoid arthritis. We abstracted ideas into 10 conceptual categories: (1) rheumatoid arthritis is in control of my body (2) rheumatoid arthritis alters reciprocity; (3) rheumatoid arthritis is an emotional challenge; (4) rheumatoid arthritis disrupts my present and future self; (5) the challenge of balancing personal and work life; (6) I am trying to make sense of what is happening; (7) rheumatoid arthritis is variable and unpredictable; (8) rheumatoid arthritis is invisible; (9) I need a positive experience of healthcare, and (10) I need to reframe the situation. We developed a conceptual model underpinned by living life precariously with rheumatoid arthritis.

Conclusions: This is the second mega-ethnography, or synthesis of qualitative evidence syntheses using the methods of meta-ethnography. Future research should consider the proliferation of qualitative evidence synthesis in order to avoid duplication of research effort. Our model for rheumatoid arthritis has some important clinical implications that might be transferable to other musculoskeletal conditions.

Keywords: Meta-ethnography; Patient experience; Qualitative evidence synthesis; Qualitative research; Rheumatoid arthritis; Systematic review.

Fig. 1

Flowchart of search process

Fig. 2

Conceptual model: (a) living precariously with rheumatoid arthritis & (b) reframing the situation. Presents our conceptual model: (a) Rheumatoid arthritis controls my body and alters the reciprocity of my relationships. It is an emotional challenge and balancing roles is precarious. Rheumatoid arthritis disrupts who I am and my vision for the future. I try to make sense of what is happening but my condition is unpredictable, variable, and sometimes invisible. A positive experience of healthcare would give some stability in this precarious situation. (b) Reframing the situation and living well with rheumatoid arthritis means finding a balance between independence and dependence: accepting the body’s imitations and realising that it is OK to seek and accept help. Focus on personal growth, think positively and find purpose