Self Management in Individuals Chronic Illness

Self Management in Individuals Chronic Illness Order Instructions: 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 age (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 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 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 disease based 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 support 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:

1. There are core similarities in self-care across different chronic illnesses.
2. Previous personal experience with illness increases the quality of self-care.
3. 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.
4. Misunderstandings, misconceptions, and lack of knowledge all contribute to insufficient self-care.
5. 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.
6. 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.
7. 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

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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 a 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).

View Figure

Figure 14-1 Individual and Family Self-Management Theory

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View Figure

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 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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the 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 a 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 the potential for capacity in which new meanings and self-identity emerged. A sense of meaning flowed from states of imbalance when there was the 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 challenge the current understandings of frailty in older adults at home, instead of 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 a 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. The 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 the home was considered a safe place and provided emotional support that promoted self-management. Participants in this study found the 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 a 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 the 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. The 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 adult 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 the home is the primary setting in which self-management occurs; they also noted that self-management interventions must be individually tailored because a one size-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 the 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 the 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 the 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). The 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).

View Figure

Figure 14-3 Medication Self-Management Model

The study was guided by the IFSMT theoretical framework and viewed self-management as a complex and dynamic phenomenon incorporating context, process, and proximal and distal outcomes (Ryan & Swain, 2009). The range of the mean age of participants was 78.2-79.6 years; the majority of participants in each group were female and primarily white. Results of this intervention study showed that care coordination led by nurses had a beneficial effect on the health status outcomes of cognitive function, depressive symptoms, functional status, and quality of life (Marek et al., 2013). The medication planner and nursing care coordination were effective in supporting client self-management and improved clinical health outcomes.

Advanced Practice Nurse-Led Group Visits

A salient aspect of supporting self-management focuses on the psychosocial aspects of behavior change to promote health and wellness. It is also essential to collaborate with clients and provide encouragement and support to increase self-confidence and self-efficacy. Strategies to Support Self-Management in Chronic Conditions: Collaboration with Clients is an evidence-based practice guideline created by Registered Nurses Association of Ontario, Canada, and published by the Agency for Healthcare Research and Quality (AHRQ, 2010). These strategies include the “Five A’s Behavioral Change Approach.” Nurses utilize the “Five A’s”—of assess, advice, agree, assist, and arrange—to improve outcomes in patients with chronic illness and incorporate multiple self-management strategies. The following strategies are addressed with the “Five A’s”:

• Establishing rapport
• Screening for depression
• Establishing a written agenda for appointments
• Assessing the client’s readiness for change
• Combining effective behavioral and psychosocial strategies with self-management education processes

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• Encouraging monitoring methods and self-management techniques (e.g., diaries, logs, personal health records)
• Establishing goals, action plans, and monitor progress
• Motivational interviewing
• Follow-up (AHRQ, 2010)

In addressing self-management needs that incorporate these areas of psychosocial support, a strategy that is gaining popularity is the group visit (GV). Advanced practice nurses are in an ideal position to promote self-management strategies through group visits in primary care. Because clients with specific chronic illnesses may have similar needs, group visits can be effective methods of clinical intervention and action. In addition, group visits may provide psychosocial support, peer connections, and motivation.

Simmons and Kapustin (2011) reviewed studies focusing on the group visit for clients living with type 2 diabetes mellitus. Nine studies were reviewed. The average group size was 8-20 and lasted for 2 hours. Simmons and Kapustin’s review of the evidence revealed that group visits yielded positive client satisfaction, improved perception of continuity of care by clients, increased knowledge about diabetes, improved quality of life, and increased self-monitoring. Clients reflected more positive attitudes regarding a group visit for self-management of their diabetes as compared to a routine office visit.

Four studies in this review revealed positive financial impact through a decrease in emergency department visits and an increase in healthcare provider productivity. Group visits may be reimbursed per insurance standards. Improvement in client outcomes was also apparent in several studies in the form of decreases in HgbA1c, improved lipid management, and improved documentation of American Diabetes Association health screening indicators such as foot examinations.

Group visits often include interprofessional collaboration between teams of healthcare professionals and clients. Although data are still relatively limited regarding the incorporation of group visits into primary care, Simmons and Kapustin’s (2011) review does suggest positive outcomes and the need for more research in this area of practice implementation.

In addition to group visits, other technological innovations can be added to stay connected with clients and support their chronic illness experience both independently and in group formats. Email reminders, virtual education platforms, telemonitoring, and online support groups are all options for individuals living with a chronic illness who require ongoing self-management support and are ideal ways to incorporate the “Five A’s” while fostering connections.

Advanced practice nurses are ideal leaders of these programs because of their knowledge of chronic disease; implementation of evidence-based practice; systems leadership for quality improvement; and abilities to apply client care technology for the improvement of health, prevent complications, work well in interprofessional teams for improved client outcomes, and utilize advanced nursing skills including those that are client-centered and provide psychosocial support (American Association of Colleges of Nursing, 2006).

Ethical Considerations in Self-Management

It is important to acknowledge the ethical issues that are largely based on structural issues within the U.S. healthcare system in the implementation of self-management programs for persons living with chronic illness. The fundamental imperative of self-management is the positive outcome from increased client involvement in care, which offers the client the personal benefits of the agency, self-efficacy, and empowerment while improving health outcomes. These are ethical aims. However, as Redman (2007) notes, some very important ethical issues remain unaddressed. Redman (2007) identifies four central

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ethical issues in the move toward client self-management of chronic illness:

1. Access is far from guaranteed. Availability of appropriate preparation so that clients and families are sufficiently competent at self-management is necessary to avoid harm.
2. The appropriate philosophy of client empowerment that has accompanied part of the self-management movement rings hollow if the process makes the client responsible without assuring the means of self-management or competent medical care.
3. There is the assumption that education is noninvasive, not requiring formal informed consent.
4. The potential for widening the gap between the “haves” and the “have-nots” in health care is very real, as the “have-nots” struggle with low literacy, the resulting inability to self-educate, and lack of access to educational materials and teachers matched to their learning needs (Redman, 2007 pp. 245-246).

Addressing these four ethical considerations requires providing uniform access to quality self-management support and competent care, addressing healthcare disparities, and acknowledging that harm may be related to educational interventions and inadequate support for self-management while still maintaining the expectation for clients to self-manage their conditions. Among these ethical issues, there may also be a tendency to blame persons living with chronic illness who are doing poorly or whose chronic illness is complicated by other comorbidities and/or psychosocial issues.

Outcomes

In addressing the needs of persons living with multiple chronic conditions, the Department of Health and Human Services (2010) published a framework with four goals:

• Goal 1: Foster healthcare and public health system changes to improve the health of individuals with multiple chronic conditions.
• Goal 2: Maximize the use of proven self-care management and other services by individuals with multiple chronic conditions.
• Goal 3: Provide better tools and information to healthcare, public health, and social services workers who deliver care to individuals with multiple chronic conditions.
• Goal 4: Facilitate research to fill knowledge gaps about and interventions and systems to benefit individuals with multiple chronic conditions.

Grey, Knafl, and McCorkle (2006) describe effective self- and family management of chronic illnesses as being measured by several outcomes across a range of general domains, including condition outcomes, individual outcomes, family outcomes, and environmental outcomes.

Condition Outcomes

Improved condition outcomes are the main goals of chronic disease self-management. The outcomes of improved health, prevention of complications of chronic illness, and the prevention of worsening chronic conditions are key measures of effective self-management. For example, improved HgbA1c levels in persons living with diabetes, improved peak-flow measurements in persons living with asthma, and improved functional mobility in persons living with arthritis are all measurable condition outcomes that are associated with evidence of improved health and a result of improved self-management. Likewise, decreased hospitalization and emergency department use are measures of improved management of chronic conditions.

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Individual Outcomes

Individual outcomes are related to the quality of life and well-being for the individual and his or her family. Quality of life is important to living with chronic illness and functioning well in the management of chronic conditions. Outcomes related to the quality of life include positive behavioral change, self-confidence, and self-efficacy. Well-being and health are subjective experiences and defined by the individual.

Family Outcomes

Family outcomes reflect the relationship within the family system and indicate how management of chronic conditions and self-management outcomes are influenced by this system. Enhanced family self-management focuses on the well-being of the family and its function.

Environmental Outcomes

Environmental outcomes extend the outcomes of quality of life, health condition, individual well-being, and family well-being to the larger environment, such as the healthcare system. Environmental outcomes reflect how improved self-management by clients and families impacts the cost of health care and healthcare utilization.

Proximal Versus Distal Outcomes

In their IFSMT model, Ryan and Swain (2009) described outcomes as being either proximal or distal outcomes of effective self-management. For example, the proximal outcomes of self-management are specific to the conditions, risk factors, and management of the condition. Distal outcomes are related to the success of the proximal outcomes and include costs associated with health care.

According to Ryan and Swain (2009, p. 10), outcomes fall into three primary categories: health status, quality of life, and cost of health. Cost of health includes both direct costs—that is, the monetary cost to manage a healthcare issue (e.g., medications, healthcare visits, durable medical equipment)—and indirect costs— that is, loss of productivity, absenteeism from work, lost leisure time, and disability (DeLong, Culler, Saini, Beck, & Chen, 2008).

Client-Reported Outcome Measures

To assess the results from client-reported outcome measures (also known as patient-reported outcome measures [PROMs]) in chronic disease self-management, a framework has been developed by Santana and Feeny (2014). This framework provides insight into clinically effective outcomes. PROMs range from distal to proximal and include proximal outcome measures in the domain of communication as outcomes of client-clinician communication, client-family communication, clinician-clinician communication, and clinician-family communication. The proximal outcome of client engagement includes shared decision making. Client management, client satisfaction, clinician satisfaction, client adherence, and client condition outcomes are all interrelated and measurable. This framework can be used to develop interventions to improve the care of persons living with and managing chronic conditions and to evaluate these interventions after they are implemented (Santana & Feeny, 2014).

National Study of Chronic Disease Self-Management

Ory and colleagues (2013) investigated how the Chronic Disease Self-Management Program (CDSMP) affected health outcomes, individual outcomes, and healthcare cost utilization over a 6-month time frame. The CDSMP is an evidence-based program that has been disseminated through aging-service networks nationally across 22 states through the Administration on Aging (AOA, 2013);

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it is funded by the American Recovery and Reinvestment Act.

This study used a pre-post longitudinal design and assessed 903 participants from 17 states (English and Spanish speaking) at 6 months. Primary and secondary outcomes of participants in the CDSMP were followed. Primary outcomes included role management, emotional management, and medical management. Specifically, social role and activity limitations, depression, and communication with physicians all improved significantly from baseline at the 6-month follow-up point. Secondary outcomes included self-assessed health status, health-related behaviors, and healthcare utilization over the past 6 months. Significant improvements were noted in increased physical activity and less healthcare utilization (i.e., decreased emergency room visits and hospitalization).

Conclusion

Self-management of chronic illness combines the elements and behaviors of client self-care with the management of disease and encourages clients to be active agents in managing their illnesses. Self-management is achieved through the use of strategies such as self-monitoring and organization of medications and treatments. Effective self-management occurs in partnership with others. Clients, families, communities, and healthcare professionals influence an individual’s confidence, motivation, and ability to manage complex illnesses daily.

Self-management requires both critical thinking and reflection. Ultimately, nurses and healthcare professionals need to understand that clients are the experts in their disease “when they are able to achieve a level of self-agency that does not rely on healthcare professionals taking the lead role in management” (Koch, Jenkin, & Kralik, 2004, p. 490). Self-management of chronic illness is a shift away from the medical paradigm and is a relationship-based, client-centered model of care.

Evidence-Based Practice Box

A 12-month parallel randomized controlled trial was used to evaluate an online disease management system that supported clients with uncontrolled type 2 diabetes. The sample included 415 clients with type 2 diabetes with baseline glycosylated hemoglobin (HgbA1c) values of 7.5% or greater. Most of the clients (382 people) completed the study. The setting for the study included primary care sites from a large, integrated group practice that shared electronic health records.

The intervention included the following elements: wirelessly uploaded home glucometer readings with graphical feedback; comprehensive client-specific diabetes summary status report; nutrition and exercise logs; insulin record; online messaging with the client’s health team; a nurse care manager and a dietitian who provided advice and medication management; and personalized text and video educational “nuggets” dispensed electronically by the care team. The HgbA1c level was the primary outcome variable.

Compared with clients who received the usual care, the intervention group had significantly reduced HgbA1c levels at 6 months. At 12 months, the differences were not significant. In post hoc analysis, significantly more intervention-group clients had improved diabetes control (more than a 0.5% reduction in HgbA1c) than usual-care clients.

The implications are that a nurse-led, multidisciplinary health team can manage a population of clients with diabetes in an online disease management program. Clients demonstrating continuous engagement through sustained uploading of glucose readings achieved better results.

Source: Tang, P. C., Overhage, J. M., Chan, A. S., Brown, N. L., Aghighi, B., Entwistle, M. P.,… Young, C. Y. (2013). Online disease management of diabetes: Engaging and Motivating Clients Online With Enhanced Resources-Diabetes (EMPOWER-D), a randomized controlled trial. Journal of the American Medical Informatics Association, 20,(3), 526-534.

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CASE STUDY 14-1

You are a nurse working in a busy primary care office and are in charge of a telephonic health intervention program to provide disease self-management to clients with multiple chronic conditions. The first self-management goal is to address medication self-management. You are preparing for your first call to a middle-aged gentleman who is living with poorly controlled diabetes, hypertension, hyperlipidemia, and newly diagnosed chronic obstructive pulmonary disease.

Discussion Questions

1. How do you begin your telephone call to introduce yourself and the self-management program?
2. The patient admits to not taking his medication regularly, especially his insulin because he finds it difficult to take time during the day to monitor his blood sugar. How would you respond to this statement?
3. Which type of strategies will you use to assess this client’s readiness to change his behavior?
4. Which questions will you ask to better understand his family and social supports and their influence on his disease self-management?

CASE STUDY 14-2

As an advanced practice registered nurse (APRN), you are writing a proposal to your practice manager in a busy internal medicine large group practice; the proposal seeks to begin diabetes group visits (DGVs) for clients with type 2 diabetes mellitus. Your plan is to start your DGVs within the next 2 months. You have already mentioned this potential project to several of your clients, and there is a great deal of interest. The practice manager is reluctant to approve this new method in delivering health care, as this is not something the practice has done before. The manager would prefer you to continue seeing your clients individually. She sees no benefit in group visits and is not ready to support this practice innovation.

Discussion Questions

1. Which evidence would you use to support client outcomes of DGVs?
2. How would you explain how DGVs would impact your productivity and reimbursement?
3. Describe how the group visit is an effective model for the care for all chronic illnesses.
4. Which other innovations or uses of technology might also be an adjunct to the care of persons living with chronic illness to support and improve self-management?

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STUDY QUESTIONS

1. How would you describe a chronic disease self-management program to a person and his or her family living with a newly diagnosed chronic disease?
2. Discuss factors that make disease self-management programs successful.
3. What are the three dimensions of self-management according to the IFSMT?
4. Why is it necessary to think critically and be reflective to self-manage one’s chronic illness?
5. Which types of activities do persons need to be able to do to self-manage chronic illness?
6. Which strategies might a nurse use in leading a chronic disease self-management program for persons and their families living with multiple chronic conditions?

Internet Resources

Primary care resources and supports (PCRS) for chronic disease management: http://improveselfmanagement.org

Stanford University School of Medicine, Chronic Disease Self-Management Program: http://clienteducation.stanford.edu/programs/cdsmp.html

National Council on Aging, Chronic Disease Self-Management Fact Sheet: http://www.ncoa.org/improve-health/center-for-healthy-aging/contentlibrary/CDSMP-Fact-Sheet.pdf

Institute for Health Improvement (IHI), Self-Management Toolkit for People with Chronic Conditions and Their Families: http://www.ihi.org/knowledge/Pages/Tools/SelfManagementToolkitforClientsFamilies.aspx

Acknowledgment

The author would like to thank Judith E. Hertz for her work on the chapter entitled Self-Care in the eighth edition.

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Self Management in Individuals Chronic Illness Sample Answer

 

Disability is a physical or mental condition that restricts a person’s ability to move, sense or undertake activities. Disabilities can arise following 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 affecting 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 or 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 a 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 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.

Self Management in Individuals Chronic Illness Reference

Huether, S., & McCance, K. (2016). Understanding pathophysiology (6th ed.). St. Louis, MO: Elsevier.