The personal impact of rheumatoid arthritis on patients' identity: a qualitative study

Abstract

Objective: To provide a detailed understanding of the direct personal experiences of living with rheumatoid arthritis (RA) and the impact of the illness upon patients' lives, to inform the improvement of clinical care and training. Method: A qualitative study was performed using data from semi-structured interviews with 26 patients who live with RA, recruited at two outpatient clinics in south-east England. Results: In addition to the physical impact of RA on patients' lives, their accounts gave detailed descriptions of how their identity was affected in relation to: (1) their private lives (e.g. difficulties in their relationships, or caring for others); (2) their public roles and responsibilities (e.g. in their paid work and in experiences of stigmatization or discrimination); and (3) their private and public domains (e.g. perceived change of physical appearance, alteration of self-image, and change or loss of social roles). Young patients (25—45 years) did report some differences in their chronic illness experiences, but patients from black and ethnic minorities did not. Discussion: The study highlights new findings which can facilitate more open communication between staff and patients on the personal impact of RA, on patients' coping strategies, and on the effects on their identity both in private and in public. This will allow multidisciplinary outpatient services to provide care more closely matched to the difficulties that are directly experienced by patients.