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- SUBJECTS AND METHODS
American Indians are a culturally heterogeneous population composed of over 300 nations, tribes, rancherias, and bands. Limited archaeological evidence suggests that rheumatoid arthritis may be a disease of New World origin (1). Research conducted in selected reservation communities across the US found that certain autoimmune rheumatic diseases are more prevalent among American Indians than either non-Indians or Alaskan Natives and that this difference is most likely genetic in origin (2). American Indian populations have been reported to have a higher prevalence of inflammatory arthritides, including rheumatoid arthritis (3–6), systemic lupus erythematosus (3, 7, 8), and scleroderma (9). In a recent national study, American Indians reported significantly more frequent pain experiences than other Americans (10), and arthritis was the greatest predictor of that pain (11).
Cultural interpretations can affect treatment decisions and self-care of chronic disease in contemporary American Indian populations. For instance, Tlingit Indians who have been diagnosed with an inflammatory arthritis may understate their level of disability as a culturally appropriate response to inquiry about functional impairment (12). Members of the Canadian First Nations generally delayed their entry into the healthcare system until more severe symptoms manifested (13). Other coping behaviors for dealing with arthritis are not documented for Native Americans. This report, therefore, is the first to describe beliefs about chronic joint pain, the interaction of personal experiences and beliefs, and the manner in which beliefs affect self-care strategies and other health-seeking behaviors. Recommendations are given to improve management of chronic arthritis pain in American Indian patients.
- Top of page
- SUBJECTS AND METHODS
The limitations of this study are typical of a single-site qualitative study. The sample size is small, consistent with the methodology, and the present study is not intended as an epidemiologic study. Further research would be needed to establish the distribution of knowledge, attitudes, beliefs, and self-care preferences in this population. However, this study establishes the domains and range of responses that would be relevant to a forced-choice survey appropriate for a larger study. Health information was collected exclusively from self-reports without concurrent clinical examination or review of patient medical records. It was not possible to confirm respondents' arthritis diagnoses, prescribed pharmacologic therapies, or physician's assessments. Nor was it possible to confirm whether respondents had discussed side effects or discontinuation of medication with their physicians.
Despite the likelihood of New World origin for rheumatoid arthritis, there was no attribution of any type of joint pain as uniquely indigenous. American Indians did not use the term “arthritis” as a synonym for joint pain; instead, they reported arthritis only when a community physician had made a formal medical diagnosis. Most respondents considered arthritis to be an illness that is not directly related to the normal aging process. The belief that chronic polyarticular joint pain was a serious health condition oriented American Indians' decisions to seek medical attention. The experience of living with arthritis resulted in different appraisals of the long-term impact, depending on the type of arthritis: decreasing functional abilities were viewed as the long-term impact among those having inflammatory arthritis, while increasing pain and suffering were the impacts expected among those having noninflammatory arthritis. These quality of life issues mirror the long-term concerns of First Nations peoples who had been diagnosed respectively with inflammatory or noninflammatory arthritis (13).
Most American Indians eventually sought medical attention for chronic joint pain. However, the severity and impact of chronic arthritis appeared to be under-recognized and therefore not optimally treated in a multidisciplinary fashion. Those with the most severe symptoms of inflammatory arthritis were likely to receive pharmacotherapies; however, severity of symptoms did not predict pharmacotherapy for noninflammatory arthritis in this population. Healthcare providers also recommended few options to treat or reduce localized pain. NSAIDs were commonly used in subtherapeutic doses for daily and/or intense joint pain episodes in people with chronic arthritis. Even a decade after onset, these persons continue to experience moderate pain on a regular basis. Although drug therapies should be the first line strategy for pain flares of inflammatory arthritis, this was the least frequently used option. Instead, American Indians most frequently endured the discomfort of their chronic pain and episodic flares. Nevertheless, this community was overwhelmingly interested in an arthritis self-help class to learn more about the condition and alternatives for managing chronic arthritis.
We explored the concept of coping strategies using open-ended questions rather than limiting the responses to items of the Cognitive Strategy Question (22) or the Vanderbilt Pain Management Index (VPMI) (23). Our open-ended questions on “coping with pain” were interpreted by all participants as queries about self-management. Typically, American Indian respondents choose management behaviors designated as active strategies on the VPMI (e.g., ignoring pain, distracting attention from pain, exercise) that have been associated with better pain control, better function, and less depression than those using passive strategies (e.g., taking medication) (23, 24). In the present sample, neither cognitive nor behavioral pain relief strategies were associated with pain intensity, the total number of swollen joints, total number of tender joints, or total number of years of chronic joint pain. However, American Indians who chose to endure painful symptoms were significantly older (mean age = 62.0 years) than persons who used pain control (mean age = 55 years) or who ignored their pain (mean age = 43 years, F[2,33] = 3.50, P = 0.042). Negative thoughts and catastrophizing, which have been associated with poor psychological outcomes (25–27) and greater physical disability (28), were generally absent in the narrative responses during in-depth interviews with the current sample. These findings underscore the cultural value of embracing and adapting to present circumstances but highlight the subtlety that might be expected in communications related to pain.
American Indian patients may not emphasize their pain complaints. Because this population describes pain in a subtle manner, verbal descriptions of mild symptoms might, in fact, reflect symptoms of a more serious nature, such as an inflammatory arthritis like RA. Therefore, the act of seeking medical attention for joint pain should suggest to primary care physicians that an American Indian patient is likely to need further evaluation of his/her joint pain or arthritis in order to arrive at an appropriate assessment and successful treatment approach. Additionally, since these patients are interested in more information about self-care, they would benefit from education on proper use of analgesics and localized therapies to reduce pain, as well as joint protection instructions for exercise.
American Indians in this study made a clear distinction between chronic pain and the expected aches and pains that result from living a full and active life. They did not consider chronic joint pain to be normal at any age. As a result, most American Indians consulted physicians after the nature of pain had become chronic in multiple joints and self-care options had failed. Nevertheless, chronic joint pain was generally under-treated in this population. In conducting a cultural assessment, clinicians should be aware that American Indian patients do not emphasize pain symptoms and that cultural appropriate expressions of painful symptoms are subtle. Their requests for medical care for chronic joint pain should be taken seriously, and they should be evaluated fully and appropriately treated, or referred to a rheumatologist for arthritis care. American Indian patients may appear stoic, enduring or ignoring pain, but many would welcome information about arthritis, disease management, and effective pain relief strategies. Future community health programs should target educational programs, such as the Arthritis Self-Help Course, to urban American Indian populations to enhance self-care options and to reduce painful symptoms.