Patient Disease Perceptions and Coping Strategies for Arthritis in a Developing Nation: A Qualitative Study

Arthritis is a leading cause of pain, functional limitation and disability worldwide [1‐3]. Little is known about the burden of arthritis in developing-world settings. However, a substantial body of research has illuminated ways in which patients in developed countries are affected by arthritis. For example, osteoarthritis (OA) and rheumatoid arthritis (RA) often lead to physical limitations and depression [4‐7]. Also, women with OA tend to report more severe pain and functional limitation as compared to men with similarly advanced disease [8]. Research on how patients in the developed world manage their arthritis has categorized coping strategies as active, involving attempts to manage or alter the course of the illness, and passive, characterized by disease avoidance and relinquishment of disease control [9]. Active coping strategies include participating in physical therapy, while passive coping includes withdrawing from social activities [10]. Active coping is typically associated with lower levels of pain and psychosocial distress than passive strategies [11, 12]. Patients in developed countries use active coping strategies more frequently than passive strategies [13].

Given the increasing prevalence of arthritis worldwide [14, 15] and the increasing reach of global health programs dedicated to alleviating the burden of chronic disease, research is needed to examine whether conclusions from research in developed countries also apply to developing countries. The objective of this study is to examine the illness experience of arthritis, including disease perceptions, physical and psychosocial effects of disease, and coping strategies of economically disadvantaged patients with advanced arthritis in the Dominican Republic, a society in which resources are scant, belief systems about disease differ from those of Western cultures, and gender roles are rigidly delineated [16].

We used semi-structured qualitative interviews to examine how patients' perceptions of the etiology of their arthritis [17] influence how they are affected by the disease and the strategies they use to cope with their illness. Our specific research questions included: How do patients conceptualize their disease and its etiology? To what extent does arthritis affect patients' abilities to continue fulfilling their social roles? Do informal and intangible resources - such as family, friends and religion - play prominent roles in managing arthritis in a setting in which professional care is difficult to obtain? And lastly, do men and women differ in the ways that they experience and cope with the disease? The overarching motivation for our work is that understanding how patients with limited resources in the Dominican Republic perceive, are affected by, and cope with their illness will help to improve treatment outcomes and the design of care delivery systems for individuals with arthritis in developing nations.

Of the 47 patients participating in OpWalk Boston 2010, 18 were approached for an interview and all 18 consented. The remaining patients had their surgeries before they could be approached. Of the 18 patients interviewed, 13 (72%) were women. Six (33%) received total hip replacement (1 bilateral) and 12 (67%) received total knee replacement (2 bilateral). The mean age of the sample was 60 years (median 62 years, range 21 - 80 years). The gender, joint distribution and age of the 18 patients interviewed did not differ significantly from those who did not participate (72% women, 79% with knee replacement, mean age of 61 among non-participants). 15 patients did not complete secondary school education and 17 were unemployed. All patients followed the Christian religion; Catholicism was the most common denomination (n = 13), followed by Evangelism (n = 3) and the Church of 7^th Day Adventists (n = 2). Subjects had experienced symptomatic arthritis for a mean of 13 years prior to surgery (median = 17 years), with 11 patients reporting at least 10 years of symptoms.

This is the first qualitative study we are aware of that examines the burden of arthritis in a developing nation. We found that patients' conceptions of disease etiology influenced the psychosocial effects of arthritis and the mechanisms they used to cope with their illness. Specifically, patients invoked environmental and faith-based theories of arthritis causation, believing that their disease had been caused by contact with water, God's will, or a combination of both. These explanations appeared to allow the patients to accept their illness. The patients' belief that God would one day rid them of their arthritis, combined with the relative inaccessibility of pharmacological and surgical interventions, influenced them to use religious coping mechanisms, such as praying and forming partnerships with God.

We note several gender differences in the social consequences of arthritis and the networks available to help patients endure their illness. While female patients felt that they could no longer continue fulfilling their roles as homemakers and church members, men reported difficulties in functioning as workers and breadwinners. Male patients relied primarily on physical support from family members. In contrast, female patients mobilized a more extensive social network of family, friends and neighbors to help them cope with the physical and emotional consequences of their disease, allowing them to better maintain their social roles.

Our findings add to prior literature on the worldwide burden of chronic disease, specifically regarding conceptions of pain and disease etiology, the role of religious coping, and the importance of social support.

For example, a study of Canadian adults found that individuals with arthritis assigned different meanings to symptoms such as pain, stiffness and fatigue as compared to those without disease. In addition, patients with arthritis typically normalized their disease, viewing arthritis as an expected part of aging [25]. In contrast, many patients in our study attributed their disease to God and environmental origins. Similar to our findings, a qualitative study of 28 Dominican women with lymphatic filiarisis, a mosquito-transmitted parasitic disease, found that women attributed their condition to diverse cause such ranging from pregnancy, to varicose veins, to supernatural causes such as having small birds reside in their leg [26].

The use of religious coping has been researched extensively. For example, a study consisting of 6,082 face-to-face interviews with healthy, community-dwelling US citizens revealed that African American and Black Caribbean patients who were married or female were more likely to use religious coping as compared to male or single patients. Higher levels of education were associated with lower utilization of prayer during stressful situations such as disease [27]. From our small sample of 18 Dominican patients, we did not observe gender or age disparities in the use of religious coping. However, women appeared to often rely on religious groups, such as church choirs, while the men mostly engaged in individual religious activities, such as praying. Another study, in which 35 patients with rheumatoid arthritis were asked to keep a daily diary of their disease experience for 30 consecutive days, found that individuals who reported daily spiritual experiences, such as praying, had higher levels of positive mood and greater tolerance of pain [28]. A study involving interviews of 109 Latinos (89.5% female) living in the US with musculoskeletal disease found that 38.1% of patients used religion to help them cope with their illness [29]. Similar to the patients in our cohort, these women stated that their faith in God helped them to endure their disease and that their religion provided them with source of comfort and hope. Furthermore, in 2008, Kirmayer et al. described how religion can imbue transcendent meaning to the pain experience. In our study, patients' perception that they were 'chosen' by God to endure the pain of arthritis and ultimately overcome the disease points to a larger role for religion in the explanatory model of arthritis than simply a method of understanding disease etiology and coping with daily pain and functional limitation. The perception of being 'chosen' by God interweaves the arthritis experience with spiritual and ritual realms that influences how patients' of pain and suffering are constructed, articulated and sustained [30].

Other data have shown the importance of social support in Hispanic patients with chronic disease. A study of 98 Latina women in the US with arthritis found that having emotional support for their illness predicted greater psychological well-being and less psychological distress [31]. In our study, almost all patients relied strongly upon support from family, friends and/or neighbors for both social support and to help them continue fulfilling their social roles.

Several limitations should be noted. Our sample size was limited by the finite number of OpWalk Boston patients and the time constraints of the interviewer. In addition, participants of OpWalk Boston represent a select sample of individuals who successfully sought surgical care for their arthritis. While the interviews show that that these patients possessed a passive view of their illness, as shown in their beliefs in disease etiology and coping mechanisms, these data may actually underestimate the passivity of the Dominican population with arthritis as a whole. The vast majority of individuals with arthritis in the country did not apply to programs such as OpWalk Boston. Therefore, we might have found more passivity among patients with arthritis if we had chosen a different sampling strategy.

Furthermore, the researchers were members of a philanthropic care organization. It is conceivable that study participants were cautious about what they said to the researchers, leading to a reporting bias. In addition, bias in interpretation threatens qualitative studies such as ours. We minimized such biases by working from verbatim text during coding, evaluating consistency in coding and conducting iterative discussions of interview content with the research team. Finally, we acknowledge that our transcription and translation process may miss subtle aspects of language and culture. These would become more apparent in prolonged in-person conversations that permit interpretation of facial expressions and nuanced turns of phrase.

In this qualitative study, we found that patients' conceptions of the etiology of their arthritis, which included beliefs that their disease had been caused by contact with water or God's will, appeared to allow them to accept their illness and influenced them to use religious coping mechanisms such as prayer. Our work has important implications for the care of patients with arthritis in developing nations and in the United States. Implementing arthritis treatment guidelines derived in developed countries for patients in developing nations may be ineffective if they are not introduced in the context of the patients' belief systems and with an understanding of their limited resources. Such plans may combine methods that are culturally congruent, inexpensive and safe -- such as prayer -- with proven interventions such as stretching and muscle strengthening. Consideration of culturally influenced disease perceptions is pertinent not only to international programs such as OpWalk Boston, but also to physicians caring for minority groups in the United States.

Our study is important in increasing sensitivity for cultural variations in perceptions in disease etiology and coping strategies. Future research could incorporate data from a larger group of patients with suitable comparison groups to make quantitative comparisons. Further studies performed on non-hospitalized Dominican patients with arthritis would also be helpful in understanding the burden of arthritis in the country. Understanding the distinctive impact of arthritis in a developing nation will provide insight to improving the care of patients with chronic conditions, which have become more prevalent as populations age across diverse global settings.