Compliance, adherence, and self-management: is a paradigm shift possible for chronic kidney disease clients?
Exploring the concepts of compliance, adherence, and self-management in people living with chronic kidney disease (CKD) is imperative. The literature indicates that compliance and adherence behaviours are poorly understood within the renal client population. Preliminary research on self-management suggests that when practitioners include the patients' beliefs, values, and concerns into the recommended treatment regimen, CKD client outcomes improved. Nursing professionals need to shift their practice to incorporate self-management strategies. Examining the theoretical foundation of self-management as well as qualitative and quantitative research findings will provide nurses with innovative directions to enhance client care and suggest future research on individuals diagnosed with CKD.
Key words: compliance, adherence, self-management, chronic kidney disease
Chronic kidney disease (CKD) sequelae necessitate complex fluid, dietary, and medication regimens in conjunction with life-long behavioural and social re-adjustment. Examining the core concepts of compliance and adherence is paramount as renal failure imposes severe restrictions, which, if ignored, detrimentally alter disease trajectory (Braun Curtin, Mapes, Schatell, & Burrows-Hudson, 2005). The quantitative and qualitative research literature demonstrates that when clients are more involved with their own chronic illness management, health outcomes improve (Bodenheimer, Wagner, & Grumbach, 2002; Heisler, Smith, Hayward, Krein, & Kerr, 2003; Lorig, Sobel, Stewart, Brown, Bandura, Ritter, et al., 1999). A critical analysis of self-management theory is warranted, explicating the challenges clients encounter when living with chronic kidney disease, and suggesting possible interventions.
Exploring adherence and self-management is exceedingly important to the CKD client population as the quantitative research literature indicates clients are 33% to 50% nonadherent with treatment regimens (Kutner, 2001; Tsay, 2003). Given that 1.9 million Canadians are currently diagnosed with kidney disease, these statistics are alarming. This is further confounded by the baby-boomer generation who are reaching 60 years and older, the age where chronic disease prevalence is increasing, averaging 2.2 chronic illnesses per person (Bodenheimer, Lorig, Holman & Grumbach, 2002; Lorig et al., 1999; The Kidney Foundation of Canada, 2005). The rise in chronic disease threatens our health status and health care expenditures (Lorig et al., 1999). Innovative biological agents and improving dialysis technology will not address the psychological and behavioural complexities inherent to CKD (Marks, Allegrante, & Lorig, 2005). These multifaceted issues combined with more knowledgeable health care consumers make self-management awareness inevitable (Bodenheimer, et al., 2002).
Chronic kidney disease induces ongoing symptoms with complex treatment restrictions and relentless uncertainty about life, particularly once hemodialysis is initiated (Lorig & Holman, 2003). The dialysis machine necessitates dependence on technology and radically alters one's autonomy (Braun Curtin et al., 2005). While health care providers dispense treatment recommendations and disease education over short clinical interactions, patients are left to make day-to-day decisions primarily on their own (Bodenheimer, et al., 2002). Ultimately, clients diagnosed with CKD cannot circumvent self-management (Lorig & Holman, 2003).
Core theoretical concepts
Exploring the concepts of compliance and adherence is crucial as clients experiencing CKD are required to follow strict limitations to prevent complications and slow disease progression (Thomas-Hawkins & Zazworsky, 2005). Berg, Evangelista, Carruthers, and Dunbar-Jacob (2006) define compliance as a broad term that describes when the clients' activities are congruent with prescribed health care recommendations. Adherence denotes a similar meaning and is often used interchangeably with compliance (Berg et al., 2006). The term adherence will be used throughout the following discussions. Non-adherence is associated with clients' unwillingness to follow physician instructions or medical ignorance (Hill-Briggs, 2003; Thorne, Ternulf Nyhlin, & Paterson, 2000). Qualitative research reveals that poor adherence is an indication of client inability to integrate treatment guidelines into their preferred lifestyle (Hill-Briggs, 2003; Krespi, Bone, Ahmad, Worthington, & Salmon, 2004; Lindqvist, Carlsson, & Sjoden, 2000).
Incorporating individual values, beliefs, and concerns into the care of clients diagnosed with renal failure demands a paradigm shift from the traditional medical model to self-management theory. The conceptualization of self-management is based on Bandura's Social Cognitive Theory (Lorig & Holman, 2003; Lorig et al., 1999). Bandura's work generated the notion of self-efficacy that delineates patients' confidence to achieve behaviours related to goal attainment, largely determined through personal experiences (Heisler, Vijan, et al., 2003; Marks, Allegrante, & Lorig, 2005). The self-efficacy concept provides professional nurses the opportunity to better understand clients' capacity to practice health-promoting behaviours (Mabe Newman, 2006). The concept consists of four aspects including: performance mastery, modelling, interpretation of symptoms, and verbal persuasion (Thomas-Hawkins & Zazworsky, 2005). Self-efficacy can be evaluated using a rating scale where one indicates no confidence and 10 represents high confidence to achieve a treatment guideline (Braun Curtin et al., 2005; Lorig & Holman, 2003). When a client's response is seven or greater, the health care provider is reasonably certain that the recommendation will be implemented (Braun Curtin et al., 2005). This knowledge improves nurses' understanding of clients' capacity to adhere with CKD recommendations (Mabe Newman, 2006).
Renal failure clients' perceived competence to follow the prescribed treatment regimen or their self-efficacy mediates self-management (Marks et al., 2005). Braun Curtin and Mapes (2001, p. 386) define self-management as "the patients' positive efforts to oversee and participate in their health care in order to optimize health, prevent complications, control symptoms, marshal medical resources, and minimize the intrusion of the disease into their preferred lifestyles." The concept encompasses three essential components including; medical management, which involves adhering to treatment regimens, role management where clients seek to maintain or create new life tasks and emotional management, which entails coping with the feelings a life-threatening chronic illness evokes (Lorig & Holman, 2003). If CKD clients are to master self-management, they must develop five skills consisting of problem-solving, decision-making, employing resources, establishing health care provider partnerships, and taking action (Lorig & Holman, 2003). During the problem-solving stage, clients learn to identify symptoms and determine possible causes for each symptom (Hill-Briggs, 2003; Lorig et al., 1999). The decision-making stage involves symptom management using many different techniques (Hill-Briggs, 2003; Lorig et al., 1999). Resource utilization and health care partnerships simply mean that clients are taught how to access and use medical care in their community (Hill-Briggs, 2003; Lorig et al., 1999). The CKD client develops an action plan where the individual sets achievable health care goals based on client perceived problems (Lorig & Holman, 2003). The action plans should be reviewed regularly, setting new objectives that foster favourable health care activities and inhibit undesirable behaviours (Marks et al., 2005).
Practitioners can facilitate self-management strategies by asking individuals with kidney disease to describe what they believe needs to be addressed to successfully manage their illness. The concept of self-management fosters a shared understanding between client and nurse of CKD treatment regimens, whereas adherence centres on the patient's behaviour (Thomas-Hawkins & Zazworsky, 2005). By shifting the health care focus to include the patients' perspective, compliance and adherence concepts become obsolete. Self-management gives clients' greater onus over their renal failure regimen and allows individuals to actively utilize their chronic illness expertise.
Professional nurses must conduct more research on the CKD client population to better comprehend adherence behaviours. Examining quantitative research findings reveals a deficient understanding of fluid adherence behaviours amongst individuals on hemodialysis (Breiterman White, 2004; Hailey & Moss, 2000; Kugler, Vlaminck, Haverich, & Maes, 2005; Morgan, 2000). Researchers have deemed adherence to mean gaining less than 1 kg daily (Bame, Petersen, & Wray, 1993; Welch, 2001) or less than 2.5 kg weight gain between dialysis treatments (Christensen, Moran, Wiebe, Ehlers, & Lawton, 2002; Fontenot Molaison & Yadrick, 2003). The obvious disparity regarding adherence research with differing operational definitions makes comparative analysis extremely difficult. These studies fail to impart understanding on how people requiring dialysis function at home with daily treatment demands, and how nurses can intervene to improve regimen adherence.
A qualitative investigation of client beliefs regarding hemodialysis revealed that the 16 participants described treatment guidelines as externally imposed, frustrating rules that could be avoided (Krespi et al., 2004). According to Krespi et al. (2004) participants did not understand kidney disease pathology or hemodialysis mechanism of action. The authors found that some participants believed hemodialysis was inconvenient, weakened the body, and provided protection against forbidden foods. The participants expressed negativity toward fluid and dietary restrictions as they were believed to produce minimal positive outcomes (Krespi et al., 2004). The research demonstrates some possible reasons for poor adherence behaviours by individuals on dialysis. Conversely, Thomas et al. (2001) surveyed 276 hemodialysis participants ages 50 years and older who completed a voluntary questionnaire regarding the renal diet, and found adherence was associated with beliefs that following recommendations reduced disease severity and decreased hospitalizations as well as complications. The dilemma remains as to why some clients see the value of compliant behaviour while others do not, and how nurses can help clients understand the importance of compliance.
Another qualitative investigation found participants want to live normally, manage their own lives, and maintain freedom and autonomy (Lindqvist et al., 2000). The study revealed some participants expressed feelings of disgust with themselves due to physical changes in appearance and the dependence on others. The clients conveyed inadequate kidney disease knowledge and an emphatic desire to maintain control in their lives (Lindqvist et al., 2000).
The traditional method of physician-prescribed recommendations and health care education insufficiently addresses the needs of CKD clients. The adherence perspective judges client behaviours based on their ability to follow what the doctor has told them to do. People requiring hemodialysis clearly need more to successfully manage their life-long complex illness.
Tsay (2003) and Tsay, Lee, and Lee (2005) examined the effects of self-efficacy training in renal failure clients on hemodialysis. The studies found a significant decrease in fluid weight gains between treatments, perceived depression, and stress after participating in the intervention (Tsay, 2003; Tsay et al., 2005). The results are promising, yet the weight gain decrease was clinically insignificant and study replication is essential to determine long-term self-efficacy training effectiveness (Tsay, 2003; Tsay et al., 2005). Regardless of study limitations, the findings suggest that when clients are provided with individualized training on renal pathophysiology, complications, medications, dietary and fluid restrictions, thirst control, and stress management combined with goal setting and verbal persuasion, physiological and psychological outcomes improved (Tsay, 2003; Tsay et al., 2005). Nurses need to systematically examine self-efficacy education, which includes performance mastery, interpretation of symptoms, and verbal persuasion to substantiate its impact on the health behaviours of CKD clients.
Teaching clients to deliver their own hemodialysis treatments has been found to significantly increase emotional wellness, energy level, and role and social functioning as measured by the Patient-Reported Health-Related Quality of Life (HRQOL) scale (Meers et al., 1996). This study was conducted in an Ontario hospital where 17 clients were taught to administer their own hemodialysis including machine set-up, correctly programming fluid removal, and self-monitoring during treatment. The intervention incorporated aspects of self-management including problem-solving, decision-making, partnering with health care professionals, and utilizing medical resources (Lorig & Holman, 2003). The study findings suggest that self-delivered hemodialysis, which encompasses components of self-management theory, re-establishes client autonomy and allows for better chronic illness adaptation (Meers et al., 1996). More research is required to establish whether similar results are evident with larger patient samples. The unfortunate limitation to this approach is that not all clients are capable of self-administering hemodialysis, thus other nursing interventions must be identified that can improve health outcomes for a greater majority of the dialysis client population.
Few studies examine self-management and CKD clients. Reviewing literature on other chronic illnesses, such as diabetes is essential to further understand the self-management concept. Bodenheimer, Wagner, et al. (2002), Heisler, Smith, et al. (2003), and Lorig et al. (1999) found self-management programs that include problem-solving and decision-making improved diabetic self-care and health outcomes including lower glycosylated hemoglobin levels. The experimental groups receiving self-management education spent less time hospitalized due to illness-related complications (Lorig et al., 1999). The study participants were not significantly different in the number of physician visits (Lorig et al., 1999) possibly indicating that chronic illness clients require regular medical monitoring. The quantitative findings suggest self-management education enhances chronic disease adaptation in the diabetic patient population. Although the results are positive, further studies must be conducted to ascertain the precise self-management educational conditions that produce success (Bodenheimer, Lorig, Holman, & Grumbach, 2002). Since individuals with different chronic illnesses share similar medical and nonmedical factors, it follows that self-management education could improve the physical, emotional, and social functioning of CKD clients (Marks et al., 2005). Conceptually, self-management could bridge the gap between nursing and client expertise on renal failure management.
The Heisler, Vijan, et al. (2003) correlational investigation found that clients and physicians did not agree on diabetic treatment goals. Patients stated decreasing physical pain, postponing starting insulin, and weaning off all medications as their highest priorities, whereas physicians listed lowering blood pressure and blood cholesterol and minimizing disease intrusion into the patients' lives as most important (Heisler, Vijan, et al., 2003). The divergent patient-provider perspective could instigate poor compliance, adherence, self-efficacy and self-management with deleterious renal disease outcomes. Creating a health care environment with providers who believe in self-management is fundamental to institutionalize the concept into practice. Further research is essential to determine how self-management education can be incorporated into professional practice.
Modifying traditional health care to include self-management education demands clients are given the opportunity to be actively involved in their own care. Qualitative research examining patient-provider negotiations of care with inflammatory bowel disease clients indicates doctors take control during clinical interactions, remain unwilling to share decision-making, and believe their knowledge trumps patient perspectives (Rogers, Kennedy, Nelson, & Robinson, 2005). Rogers et al. (2005) found that clients' required information on nutrition, pain control, disease risk, possible complications, and pregnancy was entirely overlooked. Further qualitative findings indicate medical professionals exude knowledge superiority and privilege, suggesting physicians do not value the clients' perspective (Thorne et al., 2000). Thorne et al. (2000) found clients expressed frustration that they were treated as a disease rather than an individual. The evidence from this study demonstrates that while physicians appear reluctant to share control over treatment regimens, clients earnestly want more involvement in their own care and health-related education. Self-management theory necessitates a shared enterprise between client and health care provider to produce success. Nurses must advocate for self-management integration within the CKD client population to realize positive health care behaviours and outcomes.
Nursing intervention development is crucial to enhancing the lives of clients with CKD. Few interventional studies specifically examine the improvement of compliance and adherence within the CKD patient population (Braun Curtin et al., 2005). Assuming that compliance and adherence concepts persist within health care discourse, standardized operational definitions must be determined. The disagreement amongst researchers as to what constitutes compliance creates investigative results with varied measurements as opposed to testing true differences in compliance behaviours between CKD patient samples (Bame et al., 1993). Once uniform criteria have been determined, then developing interventions that enhance compliance and adherence in the renal disease client population can be established, assuming the findings provide insight into how or why clients' choose certain health care behaviours over others.
Self-efficacy is amendable to nursing interventions, however the clients' perceived capacity may not reflect their true capabilities, making behaviour changes potentially difficult to impossible (Marks et al., 2005). Tsay (2003) and Tsay et al. (2005) point to the need for longitudinal studies that can ascertain the effectiveness and sustainability of efficacy training for CKD clients. No other proposed self-efficacy interventions for kidney disease management were found in the literature.
Hemodialysis nurses are in the best position to impact the clients' behaviour. Nurses can provide consistent feedback every treatment session on disease management issues. For example, nurses could inform clients when their between-dialysis weight gains are within recommended parameters and commend clients on their success. This exchange promotes client self-efficacy and encourages people with kidney disease to develop positive management techniques.
The self-management research urges moving beyond traditional health teaching and care techniques (Heisler, Vijan, et al., 2003; Hill-Briggs, 2003; Lorig et al., 1999). Clients must learn to self-identify needs, problem-solve, operationalize goal setting, and use their own experiences to deal with future renal failure-related issues (Heisler, Vijan, et al., 2003; Hill-Briggs, 2003; Lorig et al., 1999). Nurses should allow clients to openly discuss their frustrations with fluid and diet restrictions while avoiding lecturing clients about the consequences of poor medical adherence. Instead, nurses could ask clients how they define treatment success and together determine care goals that incorporate client values with clinical objectives. For instance, if clients state they attended a party and consumed more fluid than recommended between treatments, nurses should avoid scolding clients and discuss methods of preventing fluid overload. This may include teaching clients to self-identify and communicate with nurses that additional fluid removal is required at the treatment just prior to the party. Another method clients could use is to ask for extra ice in drinks reducing fluid consumption. Providing opportunities for clients to integrate normal life activities with dialysis sessions shifts nursing practice toward the inclusion of self-management theory into client care.
Significant progress may be achieved if nurse researchers design and test a self-management program exclusively for CKD clients (Braun Curtin et al., 2005). A self-management program could consist of a booklet containing information on recommended guidelines with a variety of strategies for the clients to select from enhancing their autonomy. The booklet would also contain information on symptoms and methods of managing each symptom. Self-management encourages clients to maintain ownership over their illness while integrating health care knowledge taught by nurses into their preferred lifestyles.
Kidney disease clients are the best judges of their own illness. Rigid, pre-determined treatment recommendations presume a one-size-fits-all approach resulting in poor adherence. Assessing the clients' self-efficacy contributes to the nurses' understanding of client-perceived values, beliefs, and treatment behaviours. When clients express a lack of confidence, professional nurses immediately know regimen practices must be amended to correspond with client-achievable illness management behaviours. Dialysis clients with labour-intensive jobs may find a one litre daily fluid restriction impossible to manage. Health care practices must move beyond simply dispensing information and dictating protocols. Nurses can collaborate with clients experiencing difficulties managing disease-related restrictions and explore methods to overcome these obstacles. Discuss options with clients, which may include extending treatment time to remove excess fluids or using candy to decrease thirst. Nurse researchers should examine how clients want to receive illness-related information to determine effective teaching methods that convey important renal pathology without imposing rigid rules on the person's life.
CKD clients confront a life-threatening and life-altering illness with debilitating consequences. Developing nursing interventions that help clients learn how to identify symptoms, determine strategies to manage their symptoms, communicate this information to nurses and receive positive feedback from nurses is imperative. Nurses must shift client care away from traditional paradigms to developing programs that incorporate self-management techniques.
I gratefully acknowledge the scholarship from The Kidney Foundation of Canada. Also, I wish to give a special thanks to Dr. Heather Beanlands and Dr. Beth McCay, Associate Professors at Ryerson University, for their highly valued encouragement and support.
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By Lucia Costantini, RN, BScN
Lucia Costantini, RN, BScN, is a Master's in Nursing student at Ryerson University and a staff nurse in the hemodialysis department at Credit Valley Hospital, Mississauga, Ontario.
Address correspondence to Lucia Costantini, e-mail: firstname.lastname@example.org
Submitted for publication: June 17, 2006.
Accepted for publication in revised form: October 16, 2006.
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