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.
Davis RM, Wagner EH, Groves T.Advances in managing chronic disease. Research, performance measurement and quality improvement are key. BMJ2000; 320: 525—6.
2.
Lewis R., Dixon J.Rethinking management of chronic diseases. BMJ2004; 328: 220—2.
3.
Murray Cjl, Lopez ADThe global burden of disease. Boston: Harvard School of Public Health, 1996.
4.
Wagner EHMeeting the needs of chronically ill people. BMJ2001; 323: 945—6.
5.
Wagner EH, Groves T.Care for chronic diseases. BMJ2002; 325: 913—14.
6.
Sackett DL, Rosenberg WM, Gray JA, Haynes RB, Richardson WSEvidence based medicine: what it is and what it isn't. BMJ1996; 312: 71—2.
7.
Holman H., Lorig K.Patients as partners in managing chronic disease. BMJ2000; 320: 526—7.
8.
Hewlett S., Cockshott Z., Byron M., et al. Patients' perceptions of fatigue in rheumatoid arthritis: overwhelming, uncontrollable, ignored. Arthritis Rheum2005 ; 53: 697—702.
9.
Edwards J., Mulherin D., Ryan S., Jester R.The experiences of patients with rheumatoid arthritis admitted to hospital . Arthritis Rheum2002; 45: 1—7.
10.
Wetherell MA , Byrne-Davis L., Dieppe P., et al. Effects of emotional disclosure on psychological and physiological outcomes in patients with rheumatoid arthritis: an exploratory home-based study. J Health Psychol2005; 10: 277—85.
11.
Haugli L., Strand E., Finset A.How do patients with rheumatic disease experience their relationship with their doctors? A qualitative study of experiences of stress and support in the doctor—patient relationship. Patient Educ Couns2004; 52: 169—74.
12.
Plach SK, Stevens PE, Moss VACorporeality: women's experiences of a body with rheumatoid arthritis. Clin Nurs Res2004; 13: 137—55.
13.
Persson L., Berglund K., Sahlberg D.Psychological factors in chronic rheumatic disease — a review. The case of rheumatoid arthritis, current research and some problems. Scand J Rheumatol1999; 28: 137—44.
14.
Melanson P. , Downe-Wamboldt B.Confronting life with rheumatoid arthritis . J Advanced Nurs2003; 42: 125—33.
15.
Carr A., Hewlett S., Hughes R., et al. Rheumatology outcomes: the patient perspective. J Rheumatol2003; 30: 880—3.
16.
BerkanovicEHMLLPA. Concordant and discrepant views of patients' physical functioning . Arthritis Care Res1995; 8: 94—101.
17.
Suarez-Almazor ME, Conner-Spady B., Kendall CJ, Russell AS, Skeith K.Lack of congruence in the ratings of patients' health status by patients and their physicians. Med Decis Making2001; 21: 113—21.
18.
Pimm TJ, Weinman J.Applying Leventhal's self regulation model to adaptation and intervention in rheumatic disease. Clin Psychol Psychother1998; 5: 62—75.
19.
Scott DL, Smith C., Kingsley G.What are the consequences of early rheumatoid arthritis for the individual?Best Pract Res Clin Rheumatol2005; 19: 117—36.
20.
Bury M.The sociology of chronic illness: a review of research and prospects. Sociol Health Ill1991; 13: 451—67.
21.
Bury M.Chronic illness as biographical disruption. Sociol Health Ill1982; 4: 167—82.
22.
Anderson R, Bury M, eds. Living with chronic illness. The experiences of patients and their families. London: Unwin Hyman, 1988.
23.
Nettleton S.The experience of chronic illness and disability. The sociology of health and illness. Cambridge: Polity Press , 1995, 68—99.
24.
Kelly M., Field D.Medical sociology, chronic illness and the body. Sociol Health Ill1996; 18: 241—57.
25.
Rosenfeld D., Faircloth C.Embodied fluidity and the commitment to movement: constructing the moral self through arthritis narratives. Symbolic Interaction2004; 27: 507—29.
26.
Wiener CLThe burden of rheumatoid arthritis: tolerating the uncertainty. Soc Sci Med1975; 9: 97—104.
27.
Locker D.Living with rheumatoid arthritis. Disability and disadvantage. The consequence of chronic illness. London: Tavistock Publications, 1983.
28.
Bury M.Meanings at risk: the experience of arthritis. In: Anderson R, Bury M, eds. Living with chronic illness. The experiences of patients and families. London: Unwin Hyman, 1988, 89—116.
29.
Williams GH , Wood Phn.Coming to terms with chronic illness: the negotiation of autonomy in rheumatoid arthritis. Int Disabil Studies1988; 10: 128—33.
30.
Donavan J., Blake DRQualitative study of interpretation of reassurance among patients attending rheumatology clinics: `just a touch of arthritis, doctor?'. BMJ2000; 320: 541—4.
31.
Abercrombie N., Hill S., Turner BSDictionary of sociology, 4th edn. London: Penguin Books, 2000.
32.
Idler E., Leventhal H., McLaughlin J., Leventhal E.In sickness but not in health: self-ratings, identity, and mortality. J Health Soc Behav2004; 45: 336—56.
33.
Scharloo M. , Kaptein AA, Weinman J., et al. Illness perceptions, coping and functioning in patients with rheumatoid arthritis, chronic obstructive pulmonary disease and psoriasis. J Psychosom Res1998; 44: 573—85.
34.
Paterson C. , Britten N.Acupuncture for people with chronic illness: combining qualitative and quantitative outcome assessment. J Altern Complement Med2003; 9: 671—81.
35.
Silverman D.Interpreting qualitative data: methods for analysing talk, text and interaction . London: Sage Publications, 1993.
36.
Seale C.Researching society and culture. London: Sage Publications, 1998.
37.
Seale C.Using numbers. The quality of qualitative research. London : Sage Publications, 1999, 119—39.
38.
Seale C.Accounting for contradictions. The quality of qualitative research. London: Sage Publications, 1999, 73—86.
39.
Marshall G.Oxford dictionary of sociology, 2nd edn. Oxford: Oxford University Press, 1998, 541.
40.
Whalley D., McKenna SP, DeJong Z, van der Heijde D. Quality of life in rheumatoid arthritis. Br J Rheumatol1997; 36: 884—8.
