Research indicates that there is a discrepancy between need and patient preference for total joint arthroplasty (TJA), an efficacious and cost-effective treatment for severe hip or knee arthritis. To understand this discrepancy, we conducted qualitative research to assess the illness perceptions and preferred accommodations and coping strategies of patients with advanced osteoarthritis who had expressed a preference to avoid TJA.
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In-depth interviews were conducted with a community sample of 29 men and women who were medically assessed as appropriate candidates for TJA but who had expressed a preference to avoid surgery. Inductive content analysis of text data was used to examine how patients’ illness perceptions and preferred coping strategies related to surgery preference.
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Participants frequently rejected the medicalization of arthritis, normalizing the experience of functional decline and defining it as age normative. Participants drew on a broad set of previous experiences with informal and formal care to make decisions about how to manage their condition. Previous negative encounters in medical and surgical care, including those from a distant past or those experienced vicariously, combined with the perception (reinforced by physicians and others) that doing nothing was a viable option deterred arthritis-related help seeking in the health care system.
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Individuals with arthritis may benefit from additional counseling regarding effective medical and surgical treatments. Physicians may better meet patient needs by gauging patient preferences for a combination of self-management strategies and medical interventions.
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- Arthritis is nonproblematic to identity; arthritis is age-normative:
“As I say, I’ve never really pushed the fact that I’ve got the arthritis because it was just basic well you’ve got it so you live with it. You know, it’s the way we’ve thought about it, that you’ve got it, there’s not a lot can be done about it, so you basically live with it.” (woman, age 65 years)
Respondent: “You know, I’m going to be 80 in August so I can be thankful I had this much mileage.”
Interviewer: “Do you have any other illnesses or health problems besides the arthritis?”
Respondent: (Chuckles) “At this age you have all kinds of problems…” (woman, age 79 years)
- Arthritis compromises identity:
“What seems to be the problem is if you’re feeling well, you think – you forget you’ve got this, you know. It’s like you go out and you overdo and then you come home and, it’s very painful.” (woman, age 65 years)
- 3. Arthritis and a “spoiled” identity:
“He (husband) has to cut my food; he has to walk me to the washroom, back out here again; it’s so horrible – especially someone who was always used to doing for myself. You know, I’ve been working since I was 12; and to have to depend on somebody so totally, it’s really horrible. I’d like to be able to get up and kick my heels up and you know, just do all the things other people do.” (woman, age 71 years)
The comments of most participants fell into 1 of the first 2 groups described above. However, one 71-year-old participant described a total loss of her identity and self as independent and autonomous. Her arthritis and its resulting incapacity had become a pervasive feature of her identity (see Table 4 above). She described multiple comorbidities and an inability to cope with her physical limitations. Throughout her interview she made frequent reference to her past self-identity and roles, and lamented the losses she had incurred. She believed her overall health was too poor for TJA. Her spouse (and caregiver) stated: “her hip certainly isn’t ah bad enough to have hip surgery, that’s for sure… and she doesn’t want it because it could kill her, because she does have other problems.” Instead of surgery, the couple focused on her daily caregiving needs and growing physical and psychological dependence. Their interview reflected a collective learned helplessness, the burden of caregiving, and the belief that nothing could be done.
“My mother had arthritis, too. But she wouldn’t let it get her down either. My mother was the most marvelous knitter and crocheter. And… she made the most beautiful pastry, but her hands were twisted with arthritis… and ah, she still continued until the last 2 years of her life.” (woman, age 62 years)
“I lost my first son to leukemia 35 years ago last March. He’d be 42 now. He was quite a man. He was 7 years old when he died, but my god, that child went through more agony in one year than most human beings go through in their lifetime. That’s why I don’t give in. A lot of people wouldn’t be able to, but I could.” (woman, age 62 years)
Interviewer: “Have you thought of what kind of, what services you may need in this area and enquired into what is available?”
Respondent: “You know, I come from the old school. When you’re this old, you grew up with nothing and you learn to do with nothing, and you learn to look after yourself, you know, as long as you could anyway, so I guess that’s what we do. We just… I don’t know … I’m only going from one daughter-in-law, the slightest thing … she goes and has it fixed, eh. And I’m not saying it’s not right, but she’s sure using the medical business and she’s good and healthy and all that now, maybe that’s good.” (woman, age 76 years)
The fourth type of support reflects findings in other OA research (1, 2, 3); however, the specific ways that significant persons in a social network provide norms for responding to illness are illustrated in our qualitative study. These norms appear to influence individuals’ coping with arthritis and their decisions to forgo surgery. Both current and historically distant relationships influenced respondents’ expectations of the appropriate illness-related decisions and behaviours, as illustrated in Table 5. In cognitive psychology, the concept of availability bias, referring to the influence of a selective reference group of others, is useful for describing this phenomenon. The excerpts in Table 5 suggest that individuals with arthritis learn about appropriate responses to their illness vicariously, or through the experience of significant others, through socialization and social learning that occurs over their lifetime.
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