Compliance, adherence,

and self-management:
Is a paradigm shift
possible for chronic
kidney disease clients?
By Lucia Costantini, RN, BScN

Abstract
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

Introduction
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.

Significance
Exploring adherence and self-management is exceedingly
important to the CKD client population as the quantitative
research literature indicates clients are 33% to 50% nonad22

herent 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 ones 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).

Lucia Costantini, RN, BScN, is a

Masters 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: lcostant@hotmail.com
Submitted for publication: June 17, 2006.
Accepted for publication in revised form: October 16, 2006.

October December 2006,Volume 16, Issue 4 The CANNT Journal

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 (HillBriggs, 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 selfmanagement theory. The conceptualization of self-management is based on Banduras Social Cognitive Theory (Lorig
& Holman, 2003; Lorig et al., 1999). Banduras 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). Selfefficacy 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 clients 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 patients 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.

Examining adherence
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

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23

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.

Self-management approach
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-

24

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 selfmanagement 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, selfmanagement 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 selfmanagement 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

October December 2006,Volume 16, Issue 4 The CANNT Journal

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.

Developing interventions
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 selfmanagement 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 clientachievable 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 persons 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,

The CANNT Journal October December 2006,Volume 16, Issue 4

25

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.

Acknowledgements
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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