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Article Excerpt
Genetic predisposition, lifestyle risks, environmental stressors, and unequal access to health care are among the factors contributing to a growing prevalence of chronic illness among racial and ethnic minorities in the United States. In the absence of a cure, chronic conditions are medically managed through treatment regimens aimed at slowing or stopping disease progression and preventing complications related to the condition. Such regimens typically involve self-administered actions, including following medication schedules, making lifestyle changes (for instance, dietary changes, exercise), and reporting for prescribed treatment sessions. Unfortunately, whenever people are given responsibility for implementing prescribed treatments, nonadherence is common. Failure to adhere to treatment recommendations is a serious problem; it can jeopardize an individual's survival, complicate the illness condition, reduce quality of fife, and require additional medical intervention, increasing physical and financial costs to the individual and increasing demand on health care resources. The extent of the problem is difficult to assess, primarily because measures of nonadherence vary depending on the particular treatment regimen. Nevertheless, the pervasiveness of the problem is evident in research findings indicating that only one-third of patients correctly follow physicians' directions (Becker, 1990). Research on treatment adherence traditionally has reflected a biomedical approach, focusing on the extent to which individuals follow a prescribed set of actions, with scant attention to the context of behavior or the phenomenological and psychosocial concerns of people suffering from chronic illness. As a result, traditional nonadherence research has been criticized as reductionistic, uni-dimensional, practitioner-oriented, and ignorant of motivational factors (Corbin & Strauss, 1988; Karoly, 1993; Trostle, 1988). Studies of treatment nonadherence that focus on how patients experience their illness, treatment regimen, and adherence behavior are limited. The present study seeks to address this research gap and the relative neglect in the literature of the population of Mexican American women. A social constructivist approach is adopted to explore the cognitive, phenomenological, and psychosocial factors influencing Mexican American women's adherence to the hemodialysis treatment regimen.
MEXICAN AMERICANS, END-STAGE RENAL DISEASE, AND HEMODIALYSIS
Primarily because of a higher incidence of type II diabetes (Pugh, Medina, Cornell, & Basu, 1995) and higher rates of complications from diabetes, Mexican Americans in the United States have as much as a six-times greater risk of end-stage renal disease (ESRD) than non-Hispanic white Americans (Schwab, Meyer, & Merrell, 1994). Additional ESRD risk factors for Mexican Americans include poorer adherence to treatments for diabetes and hypertension (Pugh et al., 1995); lower educational levels (Lafayette, 1995); and lower income levels, which can result in decreased access to health care (Smedley, Stith, & Nelson, 2002).
ESRD is a serious, life-threatening disease that affects almost every aspect of a person's life. Physical symptoms include fatigue and weakness, decreased alertness, memory loss, and impaired thought processes (Hener, Weisenberg, & Har-Even, 1996). Inability to maintain employment is common, often resulting in financial pressures and lifestyle modifications. Changes in family and social roles may also occur as a result of employment restrictions and inability to perform usual roles in the home. Feelings related to loss, dependency, disability and issues related to death and dying are among the psychological challenges often faced by people with ESRD.
The leading treatment modality for people with ESRD is hemodialysis, accounting for approximately 92 percent of all people undergoing renal replacement therapy (U.S. Renal Data System, 2005). Hemodialysis treatment sessions average four hours in length and typically are performed three times a week. In addition to undergoing this mechanical cleansing of the blood, patients must also maintain demanding medication schedules and severe fluid and dietary restrictions as compensation for their kidneys' inability to excrete fluids and wastes (Bame, Petersen, &Wray, 1993).The hemodialysis regimen has many characteristics that have been associated with higher rates of patient nonadherence, including complexity of recommended actions (Haynes, Taylor, & Sackett, 1979), duration of treatment (Gerber, 1986), incidence of side effects (Christensen, Benotsch, & Smith, 1997), and requirement of changes in lifestyle or habitual behaviors (Kaplan & Simon, 1990).
PATIENT NONADHERENCE
The issue of patient nonadherence has been the subject of much research from a variety of disciplinary perspectives. Biomedically oriented studies of treatment nonadherence have focused on four major areas: patient characteristics, illness characteristics, characteristics of the treatment regimen, and the physician-patient relationship. Although research on patient characteristics associated with nonadherence has been largely inconclusive, among dialysis patients, younger patients are more likely to be nonadherent (Bame et al., 1993; Leggat et al., 1998). Research on characteristics of the treatment regimen suggests some relationship to nonadherence.The more intense (for example, higher number of treatments, greater frequency of dosage) and complex the total regimen, the more likely it is to lead to nonadherence (Haynes et al., 1979; Paes, Bakker, & Soe-Agnie, 1997).The hemodialysis regimen, with its frequent and extended treatment sessions, dietary restrictions, and complex medication schedules, is among the most intense and complex of treatment regimens. Studies focusing on the physician-patient relationship have identified such issues as communication problems, lack of shared meanings, and unequal social or power status. Beyond the basic difficulty of communicating information, lack of English language skills can also exclude ethnic minority patients from the dominant forms of thought through which society's ideas about health and illness are constructed (Anderson, Blue, & Lau, 1991).
A large body of nonadherence research has focused on sociodemographic variables, although findings are inconsistent (Harley & Moss, 2000).Variables identified in this literature include psychodynamic processes, sociocultural factors, and cognitive factors, including locus of control, health beliefs, and causal attributions (Becker, 1990; Sensky, Leger, & Gilmour, 1996). Factors associated with nonadherence include patients' feelings related to illness and dying (Blum, 1985; Nehemkis & Gerber, 1986), patients' sense of physical and emotional vulnerability (DiMatteo & DiNicola, 1982), social support (Ell, 1996; Lo, 1999), poverty, and reduced access to health care (Fishman, Bobo, Kosub, & Womeoda, 1993). Sensky et al. (1996) found that nonadherent behavior was predicted for younger patients with external locus of control, higher levels of depression, and poor social adjustment.
Research on nonadherence has been complicated by disagreement on what exactly constitutes nonadherence and how it should be measured. Measures used in nonadherence studies have included missed medical appointments, failure to take medications as prescribed, and failure to make recommended lifestyle changes in areas such as diet and exercise. Some measures are subjective, such as patient self-reports and assessments by health care professionals, whereas others are objective, such as biochemical analyses. For hemodialysis patients, adherence traditionally has been measured objectively in three areas: medication taking, fluid intake, and dietary restrictions (Bame et al., 1993). Studies focusing on hemodialysis patients have estimated that between 30 percent and 70 percent of patients are nonadherent with medications, 25 percent to 80 percent do not comply with fluid restrictions, and between 15 percent and 50 percent do not comply with dietary restrictions (Bame et al., 1993). Christensen et al. (1992) found that dialysis patients' perceptions of family...
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