Chronic Illness and Disability
Disability is a physical or mental condition that restricts a person’s ability to move, sense
or undertake activities. Disabilities can arise following an impairment of an individual’s body
structure for instance loss of memory or loss of a limb in an accident. Moreover, disability can be
associated with birth defects which end up affect a person in later stages of life a good example
is Down’s syndrome which develops as a result of chromosome abnormalities (Huether &
McCance, 2016). . Conversely, chronic illness refers to a disease that lasts for 3 or more months
and cannot be prevented by vaccines nor cured by medication. These conditions can either be
acquired or inherited. An example of a chronic illness that is inherited is diabetes type I whereas
hypertension is a chronic illness that may develop as a result of one having sedentary lifestyle.
They cannot be used interchangeably. This is because disability is not an illness but a
body condition that impairs the body activities, and which can be as a result of sickness or a
person is born with. On the other hand, chronic illness refers to a disease which attacks a person
at any stage in life although a person can be born with it.
The legal implications are; the right to access of information on how to manage their
disabilities and the right to resources to help them manage their disability. The legal implications
are; the right to access to resources to help them manage the chronic illness as well as the right to
access information on how to manage the chronic illnesses.
The actions to be implemented by RN are; providing special requirements like special
education needs they should also provide comprehensive treatment plan as well as monitor the
progress of individuals with chronic illness.
CHRONIC ILLNESS AND DISABILITY 2
Reference
Huether, S., & McCance, K. (2016). Understanding pathophysiology (6th ed.). St. Louis, MO:
Elsevier.
Introduction
“Self-management is a dynamic process in which individuals actively manage chronic illness” (Schulman-Green et
al., 2012, p. 136). It is more than compliance or adherence to health prescriptions; it is a strategy for living with
chronic disease. Self-management implies that the individual with the chronic condition engages in daily
management by making informed decisions regarding health and life choices. Coaching and consultation from
healthcare professionals support effective self-management.
Although chronic illness can affect individuals of any age, older adults are disproportionately afflicted with chronic
illness. By 2030, one in eight individuals will be older than 65 years of age ( National Institute of Aging [NIA], 2011 ),
and the oldest old—those individuals age 85 and older—represent the fastest-growing segment of the U.S.
population. With increasing age, the likelihood of experiencing multiple chronic health problems also increases
(NIA, 2012; Vogeli et al., 2007 ). In 2005, 21% of Americans (roughly 63 million people) had more than one chronic
condition or impairment expected to last a year or longer. Approximately 80% of older adults have one chronic
condition, and 50% have at least two chronic health problems ( Centers for Disease Control and Prevention [CDC],
2011 ). It was estimated that in 2009, 326 million primary care office visits were made by adults with multiple
chronic conditions. These visits accounted for 37.6% of all medical visits by adults ( Ashman & Beresovsky, 2013 ).
Multimorbidity, meaning the co-occurrence of acute and chronic conditions, also increases as one ages (Boyd,
2010). According to a systematic review by Marengoni et al. (2011) , the prevalence of multimorbidity in older
persons ranges from 55% to 98% and “all studies [in this review] pointed out the prevalence of multimorbidity
among the older adult population is much higher than the prevalence of the most common diseases of the older
adults such as heart failure and dementia” (pp. 431-432).
Multiple factors account for an individual’s ability to self-manage complex symptoms and chronic diseases.
Strategies for self-management include self-monitoring, managing medications, exercise plans, diet, and healthy
lifestyle behaviors.
Definitions of Self-Care, Self-Management, and Disease Management
The terms self-care, self-management, and disease management are often used
interchangeably. Although the goals of these strategies are
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similar, including promotion of health, reduction of complications, and prevention of disability
while living with chronic illness, the terms actually have quite distinct meanings. Self-care is a
concept that is related to living a healthy lifestyle (Schulman-Green et al., 2013). Disease
management focuses on interventions initiated by healthcare professionals and treatments based
on standards of care often outlined in disease-specific algorithms ( Creer & Holroyd, 2006 ).
Self-management is more poorly understood. Ryan and Swain (2009) found that differences in
understanding of the meaning of self-management have slowed the translation of self-
management research into practice. Clarity of this term is essential for effective research
translation. Self-management emphasizes the client’s involvement in defining health
management problems. Self-management is intentional and “involves the use of specific
processes, can be affected by specific programs and interventions, and results in specific types of
outcomes” (Ryan & Swain, 2009, p. 218).
Disease management programs emphasize individual aspects of care in the successful
management of chronic illness and traditionally have targeted a specific chronic disease ( Fortin,
Lapointe, Hudon, & Vanasse, 2005 ). For example, there are many evidence-based programs for
management of single diseases such as diabetes, chronic obstructive pulmonary disease (COPD),
and heart failure. These interventions have demonstrated successful outcomes ( Barlow, Sturt, &
Hearnshaw, 2002 ). However, simply adding one single-disease approach to others in the case of
individuals with multiple chronic conditions is not effective. Individuals with comorbid conditions
need to understand the management of the interactions between disease states, balance
priorities, and simplify complex regimens to be able to self-mange and prevent complications
effectively. With multiple chronic conditions, a person needs to manage his or her general state
of health as well as the chronic illness(es) with their overlapping self-management needs.
Using a client-centered approach in self-management programs, instead of the diseasebased
approach used in disease management programs, is needed for individuals to successfully
manage multiple conditions ( Boyd, 2010 ). According to the website Improving Chronic Illness
Care (2006) , self-management is defined as the decisions and behaviors a person living with
chronic illness engages in that affect the individual’s health outcomes. Collaborating with family,
clinicians, and communities supports individuals in managing their health more effectively.
The Environment of Self-Management
Self-management is not limited to the outpatient or community setting, although the majority of self-management
programs do focus on individuals in the community. Indeed, self-management programs are expanding across a
variety of settings. For example, self-management programs are emerging among persons living in nursing homes
( Park, Chang, Kim, & Kwak, 2012 ) and among those experiencing homelessness ( Morrison, 2007 ). It is important for
nurses working in any setting to consider the self-management skills of the person living with chronic illness and to
promote a client-centered and client-involved approach that encourages the skills and attitudes that foster self-
management.
During hospitalization and transitions of care, promotion of self-management—including educational needs, self-
regulation, self-efficacy, social support, planning, motivation, and self-monitoring —is a fundamental aspect of
collaboration between the nurse and the client. Case management follow-up provides essential resources for the
client to continue to self-manage. Nurses are key individuals in maintaining client access to care and self-
management support across care settings.
In the community, the home has particular meanings among individuals as a space of healing and health care;
when the home becomes the location for receiving health and social services, however, both the meaning of home
and
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the means of managing oneself when supportive management is needed change ( Dyck, Kontos, Angus, & McKeever,
2005 ; Lindahl, Lide’n, & Lindblad, 2011 ). Levels of independence, privacy, and power in determining individual
needs also change when self-management of illness requires a modification in one’s role to that of receiving care
and support while also trying to maintain as much independence as is possible ( Hertz & Anschutz, 2002 ; Lindahl et
al., 2010). No matter where an individual is living, the person who is self-managing one or more chronic conditions
must manage symptoms, medications, equipment, medical specialty appointments, and activities of daily living
while making personal meaning out of the experience ( Corser & Dontje, 2011 ).
Policy Incentives for Self-Management of Chronic Disease
Healthy People 2020 ( U.S. Department of Health and Human Services [HHS], 2013 ) outlines the federal
government’s health goals for the United States. Of the 42 topic areas covered by this initiative, several relate to
specific chronic diseases (arthritis, osteoporosis and chronic back conditions, chronic kidney disease, dementias
[including Alzheimer’s disease], diabetes, heart disease and stroke, HIV, mental health disorders, respiratory
diseases, substance abuse, hearing and other sensory or communication disorders). Other topics—including access
to health care, particularly primary care—are also important in caring for persons with chronic illness. The related
topics addressed by Healthy People 2020 are health indicators that emphasize the need to better manage chronic
illness to improve the health of the nation.
In 2009, the American Recovery and Reinvestment Act funded the Communities Putting Prevention to Work:
Chronic Disease Self-Management Program. This initiative is led by the U.S. Administration on Aging (AOA) in
collaboration with the Centers for Disease Control and Prevention and the Center for Medicare and Medicaid
Services (CMS). Utilizing local agencies, health departments, and community partners, the program delivers the
Chronic Disease Self-Management Program (CDSMP) and enables older Americans with chronic diseases to learn
how to manage their conditions and take control of their health, with special attention being paid to low-income,
minority, and underserved populations (AOA, 2013).
Other incentives seek to help persons living with chronic illness remain within the community, aided by home-
based community services and agency support through self-management programs, and care assistance to prevent
costly institutionalized long-term care or hospitalization (Kaye, 2012). For example, for the frailest populations in
the United States, the Medicaid Home Care Waiver program offers a choice to children and adults to receive their
care at home, instead of in long-term institutional care facilities, through a host of medical, social services, and
self-management support ( Kaye, 2012 ). In concordance with this imperative, many individuals and families are
choosing to remain at home for their care (Spencer, Patrick, & Steele, 2009).
Middle-Range Theories of Self-Management
Middle-range nursing theories offer an understanding of the theory of self-management by conceptualizing nursing
care as based on relationships and coaching, and providing guidelines for collaborative decision making. The three
theories discussed here are the theory of self-care of chronic illness ( Riegel, Jaarsma, & Strömberg, 2012 ); Ryan
and Sawin’s (2009) individual and family self-management theory; and Grey, Knafl, and McCorkle’s (2006) self-
management and family management framework, which includes updates by Schulman-Green and colleagues
(2012).
The basis of the theory of self-care of chronic illness is the idea that “if health care professionals better
understand the processes used by
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clients in performing self-care, they can use this information to identify where clients struggle” ( Riegel et al.,
2012, p. 195 ). Three key concepts inform this theory: self-care maintenance, self-care monitoring, and self-care
management. Processes that underline self-management include decision making and reflection. In addition,
several factors affect the complex process of self-management, including self-care, one’s experience and skill,
motivation, cultural beliefs and values, confidence, habits, functional and cognitive abilities, support from others,
and access to care. The theory of self-care of chronic illness includes seven propositions:
- There are core similarities in self-care across different chronic illnesses.
- Previous personal experience with illness increases the quality of self-care.
- Clients who engage in self-care that is purposive but unreflective are limited in their ability to master self-care in
complex situations. Reflective self-care can be learned. - Misunderstandings, misconceptions, and lack of knowledge all contribute to insufficient self-care.
- Mastery of self-care maintenance precedes mastery of self-care management because self-care maintenance is less
complex than the decision making required for self-care management. - Self-care monitoring for changes in signs and symptoms is necessary for effective self-care management because
one cannot make a decision about change unless it has been noticed and evaluated. - Individuals who perform evidence-based self-care have better outcomes than those who perform self-care that is
not evidence based ( Riegel et al., 2012, pp. 199-200 ).
According to Ryan and Sawin’s Individual and Family Self-Management Theory (IFSMT), self-management
encompasses “dynamic phenomena consisting of three dimensions: context, process and outcomes” (p. 9). The
IFSMT acknowledges the complexity of self-management that occurs within the context of social arrangements
(individually, in families, and in dyads) and across developmental levels. Instead of seeing self-management on an
individual level, the IFSMT understands self-management on both family and individual levels ( Figure 14-1 ). This
theory addresses the complexity of self-management in the three previously mentioned dimensions of context,
process, and outcomes.
The framework for self and family management of chronic conditions is designed to provide a structure for
understanding factors influencing the ability of individuals and their families to manage chronic illness (Grey et
al., 2006; Tanner, 2004). The components of this framework are self-management, risk and protective factors
including condition factors, individual factors, psychosocial characteristics, family factors, and the environment
( Figure 14-2 ).
Self- and family management of chronic illness is defined as the decisions and activities that individuals make on a
daily basis to manage their chronic health problems (Grey et al., 2006;Improving Chronic Illness Care, 2007; Ryan
& Sawin, 2009). In further work on the model, Schulman-Green and colleagues (2012) identified three processes of
self-management. The first process, “focusing on illness needs,” includes the activities the individual uses to take
care of the body and treatments pertaining to the disease process—in other words, disease management. The
second process is “activating resources”; in employing these processes, the individual engages in procuring
assistance and support for family, friends, and community. The third process, “living with a chronic illness,” is
where the individual places the chronic illness within the context of living and growing as a human—that is, the
process of illness management.
For some individuals, particularly those who are older or have cognitive deficits, engaging
in self-management is an ongoing challenge ( Tanner, 2004 ). The nurse, in turn, is challenged to help the client
manage at the level of his or her ability ( Jacelon, Furman, Rea, Macdonald, & Donoghue, 2011 ). The concept of
self-management extends the responsibility of individuals with chronic illness beyond compliance and adherence to
managing an ongoing condition within the context of their daily lives. In home care, it is imperative that the nurse
consider both the client’s ability to self-manage and the family’s ability to support the individual’s self-management
(Grey et al., 2006).
Figure 14-2 Self-Management and Family Management
Framework
The ability of individuals and families to manage chronic illness depends on the severity of the condition, the
treatment regimen, the course of the disease, individual and family characteristics, and the environment in which
individuals will manage their disease (Grey et al., 2006). The severity of the illness from the perspective of the
individual may not be the same as the nurse’s perception. The implications for management may be affected by
the meaning of the illness to the individual and family. The etiology of the condition (e.g., a lifestyle disease such
as emphysema as a result of smoking or a genetically determined disease) will affect the ability for self-
management. The implications for the family in these situations may be guilt or concern for the susceptibility of
other family members. The treatment regimen for a chronic illness may be complex, requiring significant lifestyle
adjustments. Individual factors such as the person’s age, psychosocial situation, functional ability, self-perceived
ability to manage the illness, education, and socioeconomic status all contribute to the individual’s ability for self-
management. Careful assessment by the
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nurse is imperative in providing care. Once an assessment is complete, the nurse is in a position to coach the
individual or family in managing the illness.
In the model of self-management and family management, outcomes can include decreased symptoms as well as
improved individual and family outcomes such as better disease management, improved quality of life, or
improved self-efficacy (Grey et al., 2006). The main goal of the model is to help the individual improve his or her
health, using the broadest definition of health possible. The nurse should support the self and family’s self-
management, teach them the skills needed to improve health, and coach the individual and family on
incorporating those activities into their daily lives.
The Meaning of Self-Management
Understanding how older adults living in the community manage their health and make meaning of this experience
with supportive care is essential in delivering efficient, cost-effective, appropriate, and respectful care. It is
critical to understand this process from the perspective of the older adult. Effective self-management does not
happen all at once. Indeed, in a longitudinal study of self-management, Audulv, Asplund, and Norbergh
(2012) found that clients assimilated the process of self-management in stages. Immediately after diagnosis of a
chronic illness, the individual engaged in seeking effective self-management strategies. This step was followed by
considering costs and benefits, creating routines and plans of action, and negotiating self-management that fits
one’s life.
How health care is provided and how incentives are determined in delivering care in the community are based on
healthcare policy. Personal choice and the meanings of maintaining self-care and managing chronic illness at home
among older adults are understood from within the societies in which those individuals live, how formal and
informal care services are provided (or not), and through healthcare policy and payer systems.
A Balancing Act
The theme of a balancing act and making adjustments on multiple levels emerged in the research of several
authors (Crist, 2005; Ebrahimi, Wilhelmson, Moore, & Jakobsson, 2012 ; Jacelon, 2010 ; Kralik, Koch, Price, &
Howard, 2004 ; Nicholson, Meyer, Flatley, & Homan, 2013). A balancing act was the most dominant theme in
explaining and finding meaning in living at home and maintaining the care of oneself in the face of changing
aspects of chronic illness, frailty, debility, and dependence on others.
Kralik and colleagues’ (2004) descriptive study used written autobiography and interviews among nine older adults
with a mean age of 60 years. This relatively young sample included six women and three men with osteoarthritis.
In the study, participants understood self-management as a multidimensional and complex process “where the
purpose was to create order from the disorder imposed by illness” (p. 262). The individuals in this study learned
about their response to illness as a process through daily life experiences and adjusted their lives and identity by
exploring their limitations. Finding balance emerged as the meaning of self-management, as perceived by people
living with chronic illness. Living with the pain of arthritis also affected the participants’ sense of self-esteem,
identity, and helplessness, which was contrasted with, and balanced by, the strong and common theme of striving
to maintain independence. Although participants knew they needed help with certain activities, and sought this
assistance, they focused on what they could do for themselves to recover a sense of value.
Jacelon (2010) used the theoretical framework of symbolic interaction “to understand the meaning older adults
attributed to their
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self-care activities” (p. 16). Unstructured interviews, participant logs, and researcher logs identified the
overarching theme as “maintaining the balance” among 10 older adults aged 75 to 98 years who managed chronic
illness at home. The study participants’ function was either primarily independent or required assistance with
instrumental activities of daily living, such as shopping, cooking, and housekeeping. Participants maintained
balanced activity, attitude, autonomy, health, and relationships in their daily lives. This balance included
participating in complex activities in maintaining health, such as monitoring health, keeping track of medication,
and adjusting to health status changes.
Similarly, in Kralik and colleagues’ study (2004) , self-management held a unique place and meaning in the lives of
community-dwelling older adults that was broader than the management of their disease(s). Instead, managing
illness was seen as part of a larger fabric of self-care strategies that accommodated the prescribed healthcare
requirements. These strategies were balanced in ways that sought to maintain independence and autonomy in the
individual.
Nicholson et al. (2013) utilized a narrative approach in understanding the experience over time of 15 frail older
adults aged 86 to 102 years. This study challenged the negative meaning in which frailty is often viewed and
stereotyped. Instead, the meaning of maintaining care at home and being frail was understood as one of potential
for capacity in which new meanings and self-identity emerged. A sense of meaning flowed from states of
imbalance when there was loss in physical, social, and psychological health. Contrasting this was the ability to
create new connections and realize well-being beyond that of functional incapacity. Nicholson et al.’s study
challenges the current understandings of frailty in older adults at home, instead holding that affected individuals
experience both loss and capacity to create connections to themselves and to others in maintaining this capacity
“of relating to their ordinary world in a different way” (p. 1179).
Two studies explored separate aspects of receiving care from family caregivers and formal caregivers. From and
colleagues (2007) sought to understand how older adults’ self-management and health was understood in the
context of being dependent on healthcare services in their home, while Crist’s (2005) study focused on the
meaning of receiving care from family members. In both studies, older adults negotiated their autonomy within
the context of dependence on others while maintaining their balance in health and place in the community.
From et al. (2007) studied 19 older adults aged 70 to 94 years, all of whom required assistance in their home from
care providers. Experiences of health and illness were described as negative and positive polarities of the
subcategories of autonomy versus dependency, togetherness versus being ignored, tranquility versus disturbance,
and security versus insecurity. In addition to identifying the overall sense of finding balance between health and
illness, the participants in this study did not focus specifically on their diseases or current health problems.
Instead, they identified strategies to adjust in daily life. One important implication from this study was the
importance of the continuity of caregivers in maintaining this balance, developing trust and security, and ensuring
the caregiver’s ability to honor self-determination of the older adult.
Receiving care specifically from family members was the focus of Crist’s (2005) study. Through the use of
interviews and observations, older adults were asked to describe their experience of receiving care from family
members as part of their overall self-management. The theme of maintaining the balance between receiving the
care they needed and maintaining their autonomy was prominent. Additionally, all nine older adults were
comfortable with and accepted family care. Balance was supported by positive relationships with the family
caregiver, who encouraged personal growth. The assistance
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the older adult received was not seen as task oriented, but rather as an inherent part of being in a relationship.
Despite receiving variable levels of family care, the older adults viewed themselves as leading autonomous lives
( Crist, 2005 ).
Ebrahimi et al. (2012) described frail elders, who had differing self-perceived health, and highlighted how harmony
and balance were achieved in everyday life when the older adults were able to adjust to the demands of day-to-
day living in the context of their resources and capabilities. This included being active decision makers and being
validated as capable persons. Such a finding is consistent with the goal of human beings to maintain harmony and
balance as an experience of self-care and health.
In all of these studies, researchers identified the theme of maintaining balance as essential to self-management.
Such a balancing act requires adjustments to complex social, psychological, and physical changes. Balance is
achieved through the acceptance of receiving assistance from others while maintaining autonomy and
independence to the fullest extent possible. These studies demonstrate the importance of the relationships older
adults have with formal and family caregivers and indicate how supportive social interactions promote balance in
health and self-care management capacity.
Home as a Self-Care Space
The home as an environment that supports self-care has not been well studied in the literature, although it is
often cited as a preferred location for care among older adults ( Spencer et al., 2009 ). In describing the
experiences of African Americans, ages 60 to 89 years, with hypertension and cognitive difficulty, Klymko,
Artinian, Price, Abele, and Washington (2011) used a semi-structured interview process that focused on the
participants’ management of their hypertension.
The environment of home was considered a safe place and provided emotional support that promoted self-
management. Participants in this study found home and their connection to home to be something that allowed
them to emotionally and mentally care for themselves ( Klymko et al., 2011, p. 207 ). These individuals maintained
adequate blood pressure control despite their cognitive challenges. Maintaining self-care was challenging, but
home was a supportive location that was meaningful in promoting health.
Self-Determination and Shifting Identities
Self-determination is the ability to control one’s own life and make decisions based on one’s values ( Holmberg,
Valmari, & Lundgren, 2012 ). Self-identity is challenged with changes in health status and the need to depend on
others for certain aspects of care. This can threaten one’s ability to make decisions and choices. Self-
determination is an important aspect of how people choose to care for themselves and the role one takes or does
not take in managing one’s health and making self-care decisions.
Three studies sought to understand the meaning of self-management, self-care, and maintaining care at home with
assistance among older adults with explicit vulnerabilities. Clark and colleagues (2008) contrasted 12
socioeconomically challenged older adults with incomes at or below the poverty level with 12 older adults with
private health insurance, and asked each group to describe their perceptions of self-management. Racial diversity
was achieved by the equal representation of black and white men and women in both samples.
The in-depth interviews suggested that among the socioeconomically challenged group, the meaning and
significance of self-management was limited to taking medications and maintaining physician appointments. In
contrast, the more financially secure older adults assumed a broader meaning, which considered the possibility of
health promotion and being engaged in mental and physical activities, all as
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part of positive expectations for their health and aging processes.
Using a case study design focusing on life history interviews and participant observations, Donlan (2011) explored
the meaning of receiving community-based care in six frail Mexican American elders; men and women were equally
represented in the sample. Findings from these interviews revealed the significance of cultural identity that
attributed meaning to the context of care being received from community-based care providers. These cultural
themes included Latino familism, respect for the aged, gender identity, and religious belief systems. The themes
of the study demonstrated that participants identified the meaning of self-care management with family.
Participants in this study shared how having an identity as old or frail was not valued by society at large, but
contrasted this view with their Hispanic culture, which did value older adults. Maintaining self-care, managing
illness, and retaining a positive identity were self-determined by receiving concordance of care within their
Hispanic culture.
Nicholson et al.’s (2013) narrative study highlighted how loss of self-determination was a challenge to study
participants’ self-identity and was often provoked by receiving formal care services in the home or through
challenges with family caregivers who themselves were experiencing a decline in health status. All narratives in
this study referenced challenges to social identity and position in the world due to declining functional ability and
chronic illness.
Breiholtz, Snellman, and Fagerberg (2013) studied 12 frail older adults and described how as frail elders became
more dependent on caregivers’ help, the older adults’ opportunity to self-determine was greatly challenged. This
challenge compromised their self-identity and was very stressful. Unlike the theme of recovery toward balance
and acceptance found in other studies, a theme of loss and resignation was apparent in this investigation.
These diverse studies highlight how increased vulnerability and threats to self-identity impact self-determination
and expectations of health. Social determinants of health, including socioeconomic status and cultural identity,
also affect perceived self-determination and ability to self-manage chronic illness. Individual experiences of
dependency on family members and outside agencies can compromise choices and self-care agency, which in turn
may dismantle one’s social identity.
Self-Realization as Self-Transformation
Self-realization is understood as the knowledge of the self that can motivate an individual to change or transform.
Awareness of one’s needs and desires is part of self-realization and part of self-care management. The theme of
self-transformation was noted in the qualitative studies of Dunn and Riley-Doucet (2007) and Söderhamn, Dale, and
Söderhamn (2013) . Söderhamn et al.’s work revealed an important understanding of self-realization in the ability
to actualize self-care and manage complex illness. In their study of actualizing self-care management, actions
were taken to improve, maintain, or restore health and well-being among community-dwelling older adults.
Motivational themes included carrying on, being of use to others, self-realization, and a sense of confidence in
managing the future. In addition to illuminating how older adults find meaning and motivation to manage their
care, this study offered the lesson that older people who are able to actualize self-care resources can be valuable
for other older adults who may need social contact and practical assistance both as peers and as role models.
The exploration of the phenomenon of maintaining holistic well-being throughout life by Dunn and Riley-Doucet
(2007) elucidated how older adults view self-care activities within a holistic framework. In this study, 28 older
adults were organized into four focus groups.
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Two of these four groups included racial and ethnic diversity representation. Self-realization of how self-care
activities impacted the participants’ physical, psychological, social, and spiritual health was revealed. Faith and
spirituality, positive energy, support systems, wellness activities, and affirmative self-appraisal described the
context of health. Activities to promote self-care and support self-management included prayer, exercise,
altruism, and belief in God, and were essential to maintaining health in older adult’s lives.
Self-realization and transformation are important to self-care management because of how these dynamic personal
understandings motivate individuals to act in certain ways that promote health and care for themselves. In both
the studies by Dunn and Riley-Doucet (2007) and Söderhamn et al. (2013) , the participants strived for an
understanding of self and an awareness of what influenced their physical, social, psychological, and spiritual
health. Transformation was supported by freedom of choice and finding ways internally (prayer, altruism, belief,
self-confidence, desire to live) and externally (being useful to others) to care for one’s self.
These qualitative studies add to our understanding of self-care and self-management because of their broad view
of meanings for older adults living at home. Self-care is part of self-management of disease, as well as
management of the social arrangements, attitudes, and opportunities to grow from these experiences in self-
realization. Self-care management and the integrity of self-identity can be thwarted by caregivers due to a lack of
sensitivity, other competing stressors (e.g., low socioeconomic status), and caregiver relationships in which the
older adult’s self-determination is impeded.
One salient point highlighted by this review of the literature is that older adults living in the community with
multiple medical diagnoses, disease management needs, and self-care needs do not view the meaning of their
health and self-care as specifically the self-management of disease(s), nor is illness the central tenet of their
health. Rather, managing illness is a process that intermingles with other areas of care and meaning. In fact, it
appears that social support and management of relationships determine wellbeing and, therefore, health and
ability to manage illness. Areas of disease self-management, such as taking medications and monitoring health, are
only a part of the essential activities that allow older adults to maintain stability in health and at home.
Meaning is found in the relationships and activities that support balance, self-determination, and security in daily
life. Meaning, as revealed in this literature review, is less about disease management and more about a larger
holistic sense of self and home as multidimensional. Self-care management seeks to maintain these balances and
polarities that are in danger of being disrupted by illness, reliance on others for care, and older adults’ attitudes in
the face of loss. As summarized by Kralik et al. (2004) , these studies suggest that clinicians need to reevaluate
what represents self-management because the current “prescriptive” approach— one of “adherence” to a
particular set of medical treatments and physical monitoring—has little meaning to people living with chronic
illness and the means by which they actually manage their lives (p. 265).
These studies suggest that healthcare professionals should pay more attention to the social lives of older adults
and not limit the understanding of health to merely managing a set of diagnoses. These studies also offer new
insight into functional status and dependency, which is often based on mental or functional disability, and reveal
the resourcefulness that older adults demonstrate in caring for themselves and others. Supportive care systems
can preserve a sense of meaning and promote autonomy over dependence in promoting health. Understanding the
value of a broader, more holistic sense of self as highlighted in this review is integral.
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In an additional study addressing the self-management needs of vulnerable older adults, Haslbeck, McCorkle, and
Schaeffer (2012) looked at research focusing on self-management among older adults living alone late in life. Their
integrated review reflects the challenges of chronic illness self-management within the context of difficult living
situations, isolation, lack of support, and limited resources while dealing with multiple chronic conditions that
need to be actively managed and adjusted. This research also highlights how the majority of studies focus on older
women’s challenges in living with chronic illness—comparatively little information is available on older men living
alone and their self-management processes. Haslbeck at al. (2012) call for future research to address this disparity.
The authors concluded that shifting resources toward the community and home is necessary, as home is the
primary setting in which self-management occurs; they also noted that self-management interventions must be
individually tailored, because a onesize-fits-all approach is ineffective.
Nursing Interventions
Kawi (2012) organized interventions to support self-management into three categories. First are strategies to
support patient-centered attributes. such as involving patients as partners, providing education tailored to clients’
specific needs, and individualizing patient care. The second category of interventions includes healthcare
professional attributes such as possessing adequate knowledge, skills, and attitudes to promote self-management.
The third category of interventions includes organizational attributes such as an organized system of care
employing an interprofessional team and appropriate social support (p. 108). Each of these categories is apparent
in the interventions discussed here.
Interprofessional collaborative care is essential in the management of chronic illnesses, and nurses as leaders are
key in asserting a direct relationship with clients to promote the management of chronic illness over time while
respecting the goals and readiness of the client. Holman and Lorig (2004) highlighted elements of chronic disease
management that change the way the healthcare system must respond. Chronic illness management calls for an
ongoing partnership between healthcare professionals and their clients. It is important for healthcare professionals
to understand that the client knows the most about the consequences of mismanagement of disease and to take
advantage of that knowledge. The client and the healthcare professional must share complementary knowledge
and authority in the healthcare process to achieve the desired outcomes of improved health, ability to cope, and
reduction in healthcare spending (p. 239). The following nurse-led interventions highlight innovative approaches to
promoting client self-management of chronic disease and are included here as examples: coaching, medication
management, and group visits.
Coaching as a Technique to Enhance Self-Management and Family
Management
In the chronic care model (CCM), one key component is self-management support ( Wagner, 1998 ). Nurses are in an
excellent position to coach the client and family in the management of the chronic illness. Coaching is a strategy
in which the nurse uses a combination of education, collaborative decision making, and empowerment to help
clients manage their health needs ( Butterworth, Linden, & McClay, 2007 ; Huffman, 2007, 2009 ). Health coaching
may also include active listening, questioning, and reflecting ( Howard & Ceci, 2013 ). This intervention has its roots
in substance abuse counseling and has been found to be a relatively short-term, successful strategy. Health
coaching is a client-centered approach to care in which the focus is on the issues and barriers to self-management.
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To use health coaching, the nurse begins by asking the client what he or she is most concerned about. In this way,
the nurse can capitalize on the client’s interest in resolving or managing a particular problem. The next step is to
validate the client’s feelings about his or her capacity to manage the problem. Following this, the nurse might help
the client develop solutions to the problem by asking which strategies the client has used in the past and which
strategies he or she might like to try ( Huffman, 2007 ).
Medication Self-Management
One aspect of self-management of chronic illness is the management of medications. Care providers monitor
therapeutic and side effects of the medication as well as client management of complex therapeutic plans of care.
Self-management of medications from the client’s perspective requires organization, tracking, self-monitoring
(e.g., blood sugar, weight, vital signs), and record keeping. Self-organization of medication regimens, either
independently or with support, may require using technologies such as medication planners and cueing systems.
Effective self-management implies that the client will report concerns or complications such as side effects,
adverse effects, or lack of therapeutic improvement at the client’s regular meetings with healthcare professionals.
Medication self-management includes the processes of accessing medications, obtaining refills, and negotiating
costs. It also includes routine follow-up for medical appointments, laboratory monitoring, advocating for
medication list review, and possible medication reductions in cases of complex polypharmacy. Seeking out and
engaging in education vis-à-vis adjusting to changes in medication regimens is required as well.
As identified in the theory of self-care of chronic illness ( Riegel et al., 2012 ), there is a need for both critical
thinking and reflection in this process. Social supports, family, and healthcare professional interactions may all
influence the outcomes of medication safety and chronic illness management. The nurse’s role in supporting client
self-management of medications occurs within the context of interprofessional collaboration with the pharmacist,
insurers, case managers, and physicians, as well as directly with the client in ongoing assessment, communication,
behavioral and psychosocial support, and education.
A MODEL OF MEDICATION SELF-MANAGEMENT
In a qualitative nursing study of 19 older adults aged 64 to 96 years, who were taking an average of 8.68
medications each day, Swanlund, Scherck, Metcalfe, and Jesek-Hale (2008) identified themes in the successful
self-management of medications that included “successful self-managing of medications, living orderly, and aging
well” (p. 241). The processes identified in this study required high levels of organization to successfully self-
manage medications and included establishing habits, adjusting routines, tracking, simplification, valuing
medications, collaborating to manage, and managing costs (p. 241).
The theme of living orderly was how participants incorporated medications into their day-to-day activities and
included organizing daily routines and making order out of complexity despite physical limitations ( Swanlund et
al., 2008 ). Attitude was also linked to successful self-management of medications and was part of aging well,
being active, and maintaining a self-perception as being healthy. Figure 14-3 summarizes this model of
medication self-management.
NURSING CARE COORDINATION, TECHNOLOGY, AND MEDICATION SELF-
MANAGEMENT
In a randomized clinical trial to test the efficacy of using nursing care coordination and technology with the health
status outcomes of frail older adults in medication self-management,
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Marek et al. (2013) recruited 414 older adults who had difficulty in managing their medications. A team of
advanced practice nurses and registered nurses coordinated care for 12 months for the two intervention groups. All
participants received a pharmacy screen; the control group received no intervention beyond this pharmacy screen.
The two intervention groups received nurse care coordination related to self-management. One intervention group
received an additional medication dispensing machine (an automatic medication dispensing technology known as
MD.2) or a medication planner (a prefilled medication box).
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