Social-psychological and Structural Factors Influencing the Experience of Chronic Disease: A focus on Individuals with Severe Arthritis

In-depth personal interviews were conducted with 29 men and women with severe arthritis of the hip or knee. All respondents had been identified by medical experts as having demonstrable need for total joint arthroplasty, but in assessment in another study, had stated an unwillingness to consider the procedure. In interviews, we explored 1) current self reported health status and co-morbidities; 2) features and functions of the informal and formal support network; and 3) general orientations to aging, illness and independence, to examine the influence of these on participants' strategies for coping with severe arthritis and their views of treatment options. We present a multi-level model of the social-interactional and social-structural features of lives in which the experience of arthritis and responses to it are contextualized. Interviews reveal a complex set of experiences and responses: participants frequently reject the medicalization of their arthritis; they normalize the experience of functional decline (ie: they modify expectations to fit their capacity), or define it as age normative; they draw on a broad set of previous experiences from the lay health care system as well as from the formal medical care system to define an appropriate strategy of coping for the "here and now". The discussion focuses on the distinction between objectively assessed disease and subjectively experienced illness, and the implications of this distinction for medical practice.