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Article Excerpt In the United States, it is estimated that the prevalence of chronic kidney disease (CKD) has increased 20% to 25% in recent years, with significant associated burden of illness (United States Renal Data System [USRDS], 2008). In Canada, the incidence of end stage renal disease (ESRD) is increasing at a rate of 6.5% per year (Canadian Institute for Health Information [CIHI], 2005), with a 69.7% increase in prevalence since 1997 (CIHI, 2008). As researchers focus on the prevention or delay in the progression of CKD, the psychosocial aspects imposed by the disease are also worthy of study because these, too, influence patient outcomes.
Care of individuals with CKD includes multidisciplinary team interventions to delay the onset of dialysis, encourage self-management, and prepare and support patients for dialysis and/or transplantation. The NKF/ KDOQI Clinical Practice Guidelines (National Kidney Foundation, 2002b) and the Canadian Society of Nephrology clinical practice guidelines (Levin et at., 2008) recommend that each center have an established multidisciplinary team for care of patients with CKD. To deliver adequate medical and psychosocial preparation, patients should be assessed in such a clinic as soon as possible (NKF, 2002b) or at least 12 months prior to the initiation of dialysis (Churchill, Blake, Jindal, Toffelmire, & Goldstein, 1999).
The authors' clinical experience shows that the stressors experienced in the early stages of CKD are different than those experienced by individuals on dialysis. Having knowledge of the stressors and coping skills experienced by individuals with early stage CKD will be advantageous in the design and delivery of services and supportive interventions for these individuals. This knowledge may also lay the foundation for future studies exploring the influence of stressors on health behaviors and outcomes in CKD.
Literature Review
Early referral to a nephrologist and CKD clinic has been shown to slow the rate of progression of kidney disease, allow for the management of anemia, provide for patient education to make decisions regarding modality choices, facilitate access placement, provide dietary education, assure early detection and treatment of secondary hyperparathyroidism, reduce cardiovascular risk factors, and offer supportive coping interventions (Bolton & Owen, 2002; Churchill et al., 1999; Levin, 2000; Pereira, 2000). Several studies have demonstrated that early referral to a nephrologist or CKD clinic decreases morbidity, mortality, and health care costs (Kinchen et al., 2002; McLaughlin, Manns, Culleton, Donaldson, & Taub, 2001; Roubicek et al., 2000), improves long-term survival (Jungers et al., 2001), reduces the need for emergent dialysis (Schmidt, Domico, Sorkin, & Hobbs, 1998), is associated with superior patient outcomes (Goldstein, Yass, Dacouris, & McFarlane, 2004), and improves health-related quality of life for 6 months after the start of dialysis (Korevaar et al., 2002).
Patients who receive pre-dialysis education have higher mood scores, less mobility problems, less functional disabilities, and a lower level of anxiety (Klang, Bjorvell, Berglund, Sundstedt, & Clyne, 1998), and are able to make decisions regarding modality (Klang, Bjorvell, & Clyne, 1999). A multi-centered, randomized, controlled trial examined pre-dialysis educational interventions (PPI) and coping styles on initiation of dialysis in 297 individuals with CKD (creatinine of 3.4 mg/dL or less) (Devins, Mendelssohn, Barre, & Binik, 2003). The PPI group showed a delay in the onset of dialysis therapy (p < 0.00001) and learned more about renal disease and the treatment (p < 0.0001). There were no differences between the intervention and control group regarding the impact of depression, anxiety, and social support on time to dialysis. Participants who used 'blunting' (the avoidance of threat-relevant information) as a coping method had a shorter time to dialysis therapy. Devins and colleagues (2003) concluded that people who cope by avoidance may be less likely to engage in routine follow up.
Studies have been conducted on stressors and coping in individuals with renal disease on hemodialysis (Baldree, Murphy, & Powers, 1982; Gurklis & Menke, 1995; Logan, Pelletier-Hibbert, & Hodgins, 2006; Mok & Tam, 2001; Welch & Austin, 1999), peritoneal dialysis (Eichel, 1986), and renal transplantation (Hayward et al., 1989). One Scandinavian study (Klang, Bjorvell & Cronqvist, 1996) examined coping strategies and sense of coherence in patients with CKD using the Jalowiec Coping Scale (JCS) (Jalowiec, Murphy, & Powers, 1984) and a sense of coherence scale, and compared a hemodialysis and CKD group. The results of this study indicated that patients with CKD who are on hemodialysis employed very different coping strategies. The CKD group had lower coping scores and used more emotive coping strategies. Although the study conducted by Klang et al. (1996) examined coping methods with individuals with CKD, the study did not identify the stressors these individuals experience and did not report on the effectiveness of the coping strategies used. The small sample size (n = 25) reduced the generalizability of the findings.
Two qualitative studies (Harwood, Locking-Cusolito, Spittal, Wilson, & White, 2005; Mok, Lai, & Zhang, 2004), the former conducted by the authors of this study and the latter being a study conducted in Hong Kong, provide some understanding of the CKD experience. Harwood et al. (2005) interviewed 11 individuals on hemodialysis and asked them to describe retrospectively what stressors they experienced prior to dialysis. Mok et al. (2004) interviewed 11 individuals with chronic renal failure to reflect on the past course of their illness to explore how they coped and what coping strategies they used. Mok et al. (2004) identified the following themes: coping with fluctuating feelings and concerns, motivation to cope, and interdependent relationships between patients and their family members.
In both studies, the patients experienced emotional reactions to CKD, such as helplessness, powerlessness, sadness, anger, fear, guilt, and indebtedness, as they dealt with the losses and changes imposed by the illness. When first faced with renal failure, they were frequently at a loss for what to do and often just cried or isolated themselves (Mok et al., 2004). In the study conducted by Harwood et al. (2005), the individuals reported a variety of physical symptoms, psychosocial issues, logistics associated with the clinic itself (such as scheduling, multiple appointments, and waiting times), and lack of information. They not only identified a wide range of stressors for themselves, but also identified the impact on family members.
Both studies provide rich descriptions of the experience of patients with CKD but were retrospective in their design occurring once the patients were already on dialysis. To the authors' knowledge, no tool measuring stressors specific to CKD exists. Nor are the authors aware of a study conducted that measures stressors and coping strategies in a large sample of individuals with CKD not on dialysis. Lack of information about the stressors experienced by individuals with CKD and the coping strategies they employ make it difficult to design and deliver educational and supportive interventions for these individuals.
Purpose of the Study
The purpose of this study was to develop and test an instrument to measure stressors in CKD, quantify those stressors, and identify coping methods used by patients with CKD and their effectiveness. A secondary objective was to examine relationships between demographic and clinical variables on stressors and coping in this patient population.
Conceptual Framework
Lazarus and Folkman's (1984) theory provided the framework for this study. This theory is a cognitive phenomenological theory of stress, appraisal, and coping. It provides a framework for the transactional process between appraisal of an event determined stressful, coping, and the resulting outcome of the transaction.
Definitions
Psychological stress is a relationship between the person and the environment, appraised by the person as taxing or exceeding his or her resources, and endangering his or her well-being (Lazarus & Folkman, 1984). Coping is the process through which the person manages...
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