Redefined by illness: meta-ethnography of qualitative studies on the experience of rheumatoid arthritis

Abstract

Purpose: To synthesize published qualitative studies concerning the lived experience of rheumatoid arthritis (RA). To compare the conceptual features of qualitative studies covering two different time periods. Methods: In 2002, 24 items published 1975–2001 were identified in comprehensive literature searches and assessed by multiple reviewers. In 2010, the first author found 28 articles published 2002–2009 in a simple search of the Medline database and synthesized them alone. Articles were synthesized using meta-ethnography. Results: Both syntheses found that the main symptoms of RA are variable and unpredictable. However, in the first synthesis a sociological model dominated where RA was seen as an assault on self-identity with devastating social consequences. The main concepts were biographical disruption, role incompetence and the dread of dependency on others. In the second synthesis, the findings produced a model for health care practitioners tied to perceptions of control and incorporating a career-adaptation model of the experience of RA. Conclusions: We recommend that future synthesizers and primary qualitative health researchers focus more on non-hospital based populations and non-English language articles or study participants. The implications for rehabilitation follow from reflecting the findings of the synthesis against existing psychological models of coping and adaptation in RA.

Implications for Rehabilitation

• Coping and adaptation are biographical processes, although the relative importance of active “disease mastery” versus more passive “getting used to it” is unclear.

• The uncertainty and fluctuating nature of symptoms and disease course presents existential challenges for people with RA in relation to maintaining physical functioning and social roles.

• Within a social model of disability, these findings point to potential intervention sites in society and relationships that would benefit people living with RA.

• Adaptation
• arthritis
• chronic
• coping
• illness and disease
• lived experience

Acknowledgements

Roisin Pill and Pandora Pound also worked on the first synthesis. Jen Jamieson provided secretarial support. Guro Huby conducted an initial assessment of the non-English Language papers. Lone Gale translated the paper by Bjørner and Hansen (1993) from Danish to English. Experts consulted about “classic” papers: Mike Bury, Gareth Williams, Muriel Shaul, Julie Barlow, John Weinman, Paul Dieppe, Caroline Sanders, Gillian Woolhead and Lucy Blenkiron. Nicky Britten, Myfanwy Morgan and Lucy Yardley assisted with journal hand searches.