The pain of rheumatoid arthritis : the different perspectives of patient and rheumatologist
The chronic pain associated with rheumatoid arthritis (RA) is identified by patients as a priority for treatment and is said to shape their illness experience. However, review of the literature reveals that little is known about patients' perspectives on pain in RA, with even less being known about how rheumatologists, the clinical experts in patient care, perceive this phenomenon. Increasing knowledge and understanding of patients' and rheumatologists' perspectives on pain can be used to try to influence their action/inactions as well as helping to identify patients' specific concerns and unmet needs. The aims of this study were: To describe patients' and rheumatologists' perspectives on the meaning of pain in RA; To explore how these pain meanings are constructed; and To consider the implications of these constructions for pain management. This interpretive, qualitative study used semi-structured interviews to generate accounts related to respondents' perspectives on pain in RA. Purposive sampling was used to select a heterogeneous group of patients with RA (n=29) and rheumatologists (n=16). Thematic analysis was used inductively to generate findings using a cumulative, constant comparative technique (Strauss and Corbin, 1998). Both patients and rheumatologists presented multiple pain meanings but generally viewed pain as an expected symptom of the disease, both being resigned to the belief that most patients would have some degree of daily pain. Additionally, both groups considered the pain experience to have a pervasive, negative impact on life, potentially threatening the patient's concept of 'self'. In contrast, patients' and rheumatologists' pain meanings regarding clinical topics were not similar. Patients' views of medical responsibility were narrowly difined, rooted in western biomedical conceptions of pain and were influenced by experiences of clinical interactions. Accordingly, patients viewed the rheumatologist to be responsible only for 'legitimate' pain i.e. pain associated with the body and disease processes. Rheumatologists, on the other hand, presented a more comprehensive understanding of pain by incorporating psychological and social theories along with an associated 'ideal' model of care (reflecting a biopsychosocial approach). Consequently, they identified eclectic roles/responsibilities for themselves in patient management. However, rheumatologists viewed this 'ideal' as difficult to attain in the context of their experiences of clinical work where multiple constraints were perceived to exist, such as difficulties in deciphering pain, the perception of limited resources (e.g. time) and organisational barriers. In light of this, their role was often reduced to focusing simply on disease management, thus displacing the 'ideals' of patient-centred care and perpetuating the dominant biomedical discourse of pain in the clinical context. This thesis adds to the body of knowledge about patients' perspectives on pain when they live with a chronically painful condition and patient barriers to reporting pain. New findings are presented regarding the medical experts' conceptions of pain; in particular, those related to complex clinical work. The findings also identify areas of unmet need regarding patients' knowledge of pain, pain management and of the roles and responsibilities of healthcare professionals. Suggestions are made for further work in the areas of investigating patient barriers to reporting pain; exploring patient perspectives on self-management and using alternative research methods to complement and develop the findings from this study.