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and Dimensions
Roberta Braun Curtin, Donna Mapes, Dori Schatell, Sally BurrowsHudson. Nephrology Nursing Journal. Pitman: Jul/Aug
2005.Vol.32, Iss. 4; pg. 389, 7 pgs
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given and received and for appropriate goals for patients' health
activities and behaviors to be negotiated rather than "imposed."
For patients with ESRD, adherence to the treatment regimen is both
particularly important and particularly difficult. For example, patients
on dialysis must have regular dialysis sessions that are time
consuming and sometimes uncomfortable. Non-adherence to dialysis
prescriptions is associated with an increased risk of mortality and
morbidity (Bernardini, Nagy, & Piraino, 2000; Leggat et al, 1998).
Additionally, virtually all patients with ESRD are likely to be required to
monitor diet and fluid intake and to take multiple medications - in
addition to following a generally healthy lifestyle overall with regard to
smoking, alcohoi, weight maintenance, regular exercise, etc. Although
specific strategies to improve adherence among patients requiring
dialysis and transplant have not been systematically examined, the
principles subsumed under the rubric of self-management (i.e., selfcare, partnership in care, improved communication, and increased
self-efficacy) seem a most likely route to increased adherence (Kutner,
2001; Loghman-Adham, 2003).
Self-management of health care: Self-care activity. In the recent past,
the terms self-care and self-management have been used
interchangeably (Curtin & Mapes, 2001; Lorig & Holman, 2003). It is
only as our understanding of the concept of self-management has
matured over the past several years that it has become increasingly
apparent that self-care is just one of several dimensions of the selfmanagement domain (Curtin, Johnson et al., 2004). As its name
implies, self-care is the "action" dimension of self-management in
health care and it derives in part from a patient empowerment
approach. Patient empowerment has been defined as a philosophy of
health care that proceeds from the perspective that optimal outcomes
of health care are achieved when patients become active participants
in the health care process (Brennan & Safran, 2003). Without a doubt,
being active in health care includes performing at least some aspects
of physical care. As such, self-care behaviors, such as measuring fluid
intake or blood pressure or checking access bruit are included (Curtin,
Bultman Sitter, & Schatell, 2004). However, more general health care
related action steps are also subsumed in the dimension of self-care,
including interacting with health care professionals, goalsetting,
contacting resources, negotiating for and choosing treatments,
decision making, information-seeking, responsibility for consequences,
symptom reporting, wellness behaviors, etc.
For patients with ESRD, the level of self-care activity required may
vary by modality and from patient to patient. However, every ESRD
patient must make decisions on a daily basis about positive and
disease.
Conclusion
Since there is no primary prevention or cure for most chronic
diseases, the goal of chronic disease management is to achieve the
highest level of functioning and the lowest level of symptoms
possible, given the severity of the disease (Clark, 2003). Patient selfmanagement of both the health care-related aspects of life and the
everyday aspects of life affected by the disease seems to be the most
promising route for achieving that goal. Moreover, there is substantial
evidence in the literature suggesting that self-management skills can
be taught, self-management efforts can be supported, and selfmanagement activities can contribute to positive health outcomes
(Lorig, Gonzalez et al., 1999; Lorig & Holman, 2003; Lorig, Sobel et al.,
1999).
In spite of the overall practicality of this approach and the mounting
evidence for its success, self-management programming has been
slow to be established on any sort of large scale or systematic basis in
the US. However, the Stanford Patient Education Center, under the
leadership of Kate Lorig, has enjoyed great success and has had
significant impact. This center has developed and tested both
condition-specific programs and also a program applicable across
disease entities. Lorig and Holman (2003) reported that the latter
program, the Chronic Disease Self-Management Program (CDSMP) has
now been adopted by three major HMOs and 150 smaller HMOs across
the U.S. Additionally, the National Health Service in the United
Kingdom has initiated an Expert Patient initiative based on the
principles of self-management and using both the CDSMP and ongoing
consultation with Lorig as integral parts of its planning (UKDepartment of Health, 2001). Although the implementation of these
programs represents an enormous step forward, there is still a long
way to go toward the goal of making self-management an accepted
and expected part of health care. Unfortunately, there is an especially
long way to go in ESRD since a comprehensive, systematic, diseasespecific self-management program for patients with ESRD has yet to
be designed and tested.
End stage renal disease, with its associated complications, multiple
symptoms, and complex treatment requirements is a chronic disease
for which patient self-management seems particularly appropriate.
Unfortunately, there is relatively little information in the literature
about self-management programming for patients with ESRD. The Life
Options Rehabilitation Program has been championing selfmanagement for patients with kidney disease, including patients with
ESRD for the past 11 years, most recently through its on-line selfmanagement curriculum called Kidney School(TM)
(www.kidneyschool.org). Additionally, Life Options produced a series
of newsletters devoted to the topic of self-management for patients
with kidney disease (Life Option Rehabilitation Program, 2001; Life
Options Rehabilitation Program, 2000 a-d). Based on such information,
there is reason to hope that some inroads have been developed.
However, to date, the self-management efforts reported in the ESRD
field have tended to be intermittent initiatives rather than long-term,
programmatic interventions.
The successful management of illness and treatment and the
simultaneous maximization of overall quality of life are important
agendas for individuals with chronic disease. Helping patients with
ESRD realize these goals should be a primary responsibility of the
health care professionals who provide their health care. The principles
and tenets surrounding the concept of self-management seem to
represent the best avenue for making such goals a reality for
individuals with ESRD. If institutional level changes are slow in
coming, there are nevertheless many opportunities in the practice of
nephrology for encouraging self-management on a case-by-case basis.
For example, nephrologists, nephrology nurses, social workers, and
dietitians are all in the position to help patients with ESRD to be
successful self-managers. Because nephrology nurses have contact
with patients as modality decisions are being made, as the dialysis
process is being learned, and as understanding of the ramifications of
ESRD is beginning to occur in patients, they can be involved both in
teaching patients about the value of self-management and in
supporting patients in their early efforts to partner in their own care.
Nephrology nurses can consistently strive for improved
communication and can actively pursue the concordance that
precedes patient adherence to prescribed regimens. Nurses can seek
to transmit the information that patients require for making decisions
regarding their own care and can help patients gain confidence that
the actions they (patients) take will lead to the positive outcomes they
desire. Additionally, nephrology nurses can guide and encourage
patients as the patients begin to explore how they will adapt their
everyday lives to the new life state in which they find themselves.
Over time, even such individual level interventions will likely have a
significant positive effect and will contribute to the understanding and
application of the concepts of self-management for patients with
ESRD. In this manner, given enough time and sufficient instances,
self-management education and support might be incorporated into
routine care for patients with ESRD.
Additional research into the impact of self-management on the
changes in health behavior and improved health status: An explanatory study. Patient
Education and Counseling, 6(2), 69-72.
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