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Integrating Self-Care and Chronic Disease Management through a Community Based Research Approach

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I Overview

health conditions, defined as health problems that require ongoing
management over a period of years or decades (Epping-Jordan, 2005),
currently account for more than 50% of the global burden of disease. As
their prevalence increases with age (Lubkin, 2002; Schultz and Kopec,
2003) and as adults aged sixty and over are expected to substantially
increase in number over the next 40 years (Tanner, 2004), greater
attention towards finding practical strategies to enhance chronic
disease management efforts (CDM) is needed (Willison and Andrews,
2005). CDM may be defined as a holistic and comprehensive approach to
health care that emphasizes ways to maintain independence and keep as
healthy as possible through prevention, early detection and management
of chronic conditions (Ministry of Health Services, 2005).

it is acknowledged in the literature that effective management,
prevention and rehabilitation of chronic conditions requires a model of
health care that is not predominately focused on acute symptoms, health
care systems worldwide remain predominately cure oriented. As such,
these systems remain ill-equipped to meet population needs for
comprehensive health care for chronic conditions (Epping-Jordan, 2005).
This problem is perpetuated by current funding mechanisms and
established health care policies (Dwyer, 2004). Funding for CDM
programs, for example, continues to be lacking. In Canada, such
programs are often affiliated with hospitals and are often vulnerable
to cuts in financing when hospital deficits rise (Wong et al., 2004).
The end result is a looming crisis in long-term care characterized by
generally poor access to health care for individuals with chronic
health conditions (Stuart and Weinrich, 2004). Given this, alternative
strategies such as an increased emphasis on self care are becoming more
and more important.

Health promotion and disease prevention
strategies are also part of the new public health movement (Macdonald
and Bunton, 2002).  The goal of maximizing and managing health is
of particular importance to those with chronic ailments, who may seek
such strategies either through self-care or within medical settings
(Barr et al., 2003). To date however, there remains a lack of
empirically based information about the self-care behaviors of
chronically ill adults (Gallagher and Stratton, 1997). For example, the
use of complementary and alternative health care as a potential chronic
disease management strategy by the chronically ill is just one area
requiring further research (Willison, 2005, 2006 and 2006b; Willison et
al. 2005, 2005b and 2005c; Willison and Andrews, 2004). In general,
improved recognition of the role and importance of self-care in health
promotion and disease prevention strategies is needed, as is finding
ways to support such efforts in a given community.

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II Importance of Self-Care

is a crucial element in facing illness and maintaining function as well
as morale and encompasses activities related to health promotion,
disease prevention, illness and injury treatment, chronic disease
management and rehabilitation (Bhuyan, 2004). Indeed, self-care and
health promotion share underlying themes: both entail the involvement
and empowerment of people in promoting and caring for their own health
(Bhuyan, 2004) by sustaining and/or maximizing health as best as
possible and by preventing illness (Haber, 2003; Epp, 1986; Lalonde,
1974; Ottawa Charter, 1996).

may be broadly defined as
"the range of health and illness behavior undertaken by individuals on
behalf of their own health" (Dean, 1992:34) and/or "the activities
individuals, families and communities undertake with the intention of
enhancing health, preventing disease, limiting illness and restoring
health" (Health Education, 1983:181). One could position such
activities as an integral part of a CDM strategy (Becker et al., 2004;
Jayasuriya et al., 2001). Skeptics may link such an emphasis as being
hostile to those experiencing physical decline (Hepworth) or as a way
to place full responsibility for health on the individual
(Daykin and Naidoo, 1995). While such ideas are important to consider,
such should not hinder our progress in developing
and implementing self-care programs and alternatives for those with
chronic dysfunctions (Willison, 2005).

Effective management of
chronic illness and disease is complex and requires significant
participation by patients and their families. Arguably, successful
management of chronic conditions depends on adequate self-care (Bayliss
et al., 2003). According to Bodenheimer et al. (2002), self-management
by individuals with a chronic condition is not an option: individuals
with long-term chronic conditions must become partners in their own
care because they have the day-to-day, primary responsibility to manage
that disease or condition in collaboration with their physician
(College, 2003). However, as clinicians may be present for only a
fraction of a patient's life, nearly all outcomes are mediated through
patient behavior (Glasgow et al., 2003). This is further addressed by
Korff et al. (1997), who note that medical care for conditions such as
chronic illness is rarely effective in the absence of adequate
self-care and that disease control and outcomes depend significantly on
the effectiveness of self-management. As such, self-management for
people with chronic disease is being increasingly recognized as a
necessary part of treatment (Dongbo et al., 2003).

Such an
approach is further supported by an increasing number of studies in
clinical populations which consistently show that self-management of
symptoms is associated with better outcome (Cohen et al., 2000).
Further, active self-management strategies have been found to be
associated with lower levels of pain-related disability and health care
use (Blyth et al., 2005). Yet, as it stands, people with chronic
disease and their health care providers often fail to work together to
set goals and commit to achieving them. This often limits
self-management efforts due to insufficient supports to empower people
to manage their own chronic illnesses (Ockenden and Cheema, 2004).

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III The Potential of a Community Based Research Approach

self-management efforts and concerns could be better understood through
approaches that emphasize collaboration with communities in exploring
and acting on locally identified concerns is of central interest to
community based researchers (Minkler et al., 2003).  Community
based research (CBR) is a collaborative, partnership-driven approach to
research that equitably and actively involves community members,
organizational representatives and researchers in all aspects of the
research process. Here, partners each contribute their expertise and/or
life experiences to enhance understanding of a given phenomenon (e.g.,
ways/needs to cope with chronic disorders [Miller, 2000]) and integrate
the knowledge gained with action to benefit the community involved
(Israel et al., 2001).  Rather than being ignored, patients and
communities may instead be empowered and seen as partners in their own
care. "Empowerment" here holds that individuals accept responsibility
to manage their own conditions and are encouraged to solve their own
problems with information, not to be managed solely by professionals
(Bodenheimer et al., 2002).

CBR has the potential to enhance
effective communication between health care professionals and the
patients and/or clients they serve, plus improve holistic and
patient-centered health care. In a holistic approach there is an
assumption that everything within a given community is connected and
that in order to grasp a given community's actual (health) needs
community participation is essential. As the current health care system
is overly cure oriented and often does not take into account a given
community's voice, it may be argued that the provision of more
effective and efficient care for those with chronic conditions may be
brought about by the involvement of those who have such conditions
and/or those who are given permission to speak on their behalf (i.e.,
caregivers). Overall, CBR could serve as an effective means through
which the perceived health care (and social) needs of such vulnerable
populations as the chronically ill may become better known to health
promoters and others. Through this enriched knowledge resource there is
improved potential that actual community health care needs may be
better met.

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IV Conclusion

et al. (1998) have argued that a redistribution of resources within
health care funding that would favor primary (health) care and
community services (with an increased focus on such aspects as home
care, health promotion, community health centres, public health
programming) would serve as effective means towards reducing present
inequalities in accessing health care. Presently, however, despite
evidence to suggest that the prevention and management of chronic
disease is increasingly becoming a focus of primary health care (Dongbo
et al., 2003), inequalities in accessing health care services (e.g.,
CDM) within communities still predominate.  By conducting CBR
these inequalities may be more effectively identified as well as

There is also a common misconception that prevention
is not as effective once chronic disease processes have begun (Bhalotra
and Mutschler, 2001). However, patient self-management of chronic
disease is important because although many who have chronic conditions
cannot be cured, they may be prevented from causing further disability
(Zhan et al., 1998). Disuse of muscle groups, for example, can increase
and/or aggravate chronic and debilitating conditions with decreases in
musculoskeletal functioning, endurance, lean body mass, strength and
flexibility (Peyton, 1998). Moreover, rapid deterioration of an
individual with chronic illness can result if no treatment is provided.
It therefore becomes crucial to identify the treatable components of a
functional problem afflicting individuals and provide appropriate
therapeutic interventions (WHO, 1989). Implementation of CBR can play
an important role in this area by ensuring the crucial involvement of
the person with the disorder (e.g., through partnerships).

that can influence sustaining and/or maximizing the functioning of
individuals are complex and include such factors as the health care
system, individual motivation and the social and physical environment
(Kane and Kane, 1990). Arguably, any health promotion/self-care
intervention strategy that has the potential to improve the health of
individuals, improve individual health-related quality of life (e.g.,
improve dexterity, ambulation, self-care, and mobility; Kopec and
Willison, 2003), increase life expectancy, improve patient satisfaction
and enhance independence -- plus positively affect the organization of
care -- must be viewed as worthy of further consideration as well as of
proper funding for more interdisciplinary research (NHS, 2005). That
CBR can be used to better understand such facets as community health
needs and ways to reduce health inequalities (Minkler et al., 2003)
needs to be highlighted more by health promoters and others alike.

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