Identify two middle-range theories that could be used to view the phenomenon of interest. Compare and contrast how the phenomenon would be shaped by each theory.
CHAPTER 16 Theory of Self-Care of Chronic Illness
Barbara Riegel, Tiny Jaarsma, and Anna Stromberg
Populations worldwide are aging (He, Goodkind, & Kowal, 2016). With aging comes a growing prevalence of chronic illness. In the Medicare population of the United States, two thirds have at least two or more chronic conditions or multimorbidity (2011). Similar trends are seen in Europe (Schmidt, Ulrichsen, Pedersen, Botker, & Sorensen, 2016). A recent editorial stated that the epidemic of heart failure, a particularly common chronic illness, has been replaced by a tsunami of comorbidities (Jhund & Tavazzi, 2016). The primary means of car- ing for these conditions is self-care; it is estimated that 95% of care for chronic illnesses is performed by patients (Funnell & Anderson, 2000).
Over the past 20 years we have been engaged in caring for adults with chronic heart failure and devised the two most widely used measures of self- care of heart failure (Jaarsma, Stromberg, Martensson, & Dracup, 2003; Riegel, Carlson, & Glaser, 2000; Riegel, Lee, Dickson, & Carlson, 2009; Riegel et al., 2004). During the course of those efforts we recognized that few of our patients had only heart failure and many of the required self-care behaviors were simi- lar for different chronic illnesses. We also recognized that those with more than one chronic illness faced unique challenges that were not acknowledged but rather had a “silo” perspective focused on a single condition.
■ PURPOSE OF THE THEORY AND HOW IT WAS DEVELOPED
The purpose of the middle range theory of Self-Care of Chronic Illness (Riegel, Jaarsma, & Stromberg, 2012) was to capture a more holistic view of patients— those with varied or multiple chronic conditions. The theory was developed during a period when Professor Riegel was a visiting professor at Linkoping University in Sweden where Professors Jaarsma and Stromberg teach in the Division of Nursing Sciences. Spending time together, talking about self- care, we recognized that the work we had done previously in heart failure was applicable to a wide variety of patient populations. We devoted extended intervals to discussions of our prior work on the Situation-Specifi c Theory of Heart Failure Self-Care (Riegel & Dickson, 2008; Riegel, Dickson, & Faulkner, 2016), cultural beliefs about self-care in Sweden (Stromberg, Jaarsma, & Riegel,
Copyright Springer Publishing Company. All Rights Reserved. From: Middle Range Theory for Nursing, Fourth Edition DOI: 10.1891/9780826159922.0016
342 I I . M IDDLE RANGE THEOR IES READY FOR APPL ICAT ION
2012) and other countries (Jaarsma et al., 2013), and the factors infl uencing self-care. We reviewed other theories of self-care and discussed those at length (Denyes, Orem, Bekel, & SozWiss, 2001). We each drafted content and then met regularly to discuss and refi ne our ideas as they evolved. Together we wrote assumptions and propositions. The concepts, propositions, and assump- tions were reviewed by clinical researchers working with different chronic ill- ness populations and revised based on their recommendations. This process required more than a year.
■ ASSUMPTIONS OF THE THEORY
One of the assumptions of this middle range theory is that there are differ- ences between general health-promoting self-care and illness-specifi c self-care. General self-care is a dynamic, subjective process infl uenced by age, gender, culture, education, socioeconomic status, and so forth. Self-care that occurs in association with a chronic illness also is infl uenced by other people (e.g., healthcare providers) and has direct consequences for symptom relief, quality of life, and survival.
A second assumption is that when providers interact with patients, their intention to form a partnership will motivate patients to engage in a level of self-care that can realistically be incorporated into their daily life and lifestyle. It is within this context of a mutually rewarding relationship that the self-care of chronic illness takes place. Engaging in self-care makes the patient an active participant in the management of illness. Self-care behaviors may be recom- mended by others (e.g., healthcare providers or family members) or may be chosen by the patient to meet his or her own goals.
■ MAJOR CONCEPTS OF THE THEORY
Self-care is the overarching or “umbrella” concept built from the three key concepts of self-care maintenance, self-care monitoring, and self-care manage- ment. Self-care is defi ned as a process of maintaining health through health- promoting practices and managing illness. Self-care is performed in both healthy and ill states. It is important to note that everyone engages in some level of health-promoting self-care daily with toothbrushing, food choices, and so on. However, self-care might have another meaning to patients with a chronic illness, since living optimally with a chronic illness often requires a set of behaviors to control the illness process, decrease the burden of symptoms, and improve survival.
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Self-care maintenance is behaviors used by patients with a chronic illness to preserve health, to maintain physical and emotional stability, or to improve well-being. These may be health-promoting behaviors (e.g., smoking cessa- tion, preparing healthy food, coping with stress) or illness-related behaviors (e.g., taking medication as prescribed). Engaging in self-care maintenance ben- efi ts from refl ection on the usefulness of the behavior, vigilance in performing the behavior, an ongoing evaluation of benefi ts, and effectiveness of the activi- ties. In addition, adaptation often comes into play to accommodate changing conditions. For example, a person who is prescribed a new medication with food restrictions will need to revise his or her routine to integrate changes into a new lifestyle.
Self-care monitoring is the process of observing oneself for changes in signs and symptoms. Self-care monitoring is a process of routine, vigilant body monitoring, surveillance, or body listening (Dickson, Deatrick, & Riegel, 2008). The goal of self-care monitoring is recognition that a change has occurred. Recognition is facilitated by somatic awareness (Jurgens, Fain, & Riegel, 2006) or somatic perception (Jurgens, Lee, & Riegel, 2015), defi ned as sensitivity to physical sensations and bodily activity.
Monitoring for changes related to health or well-being is a normal human behavior but in self-care of chronic illness, monitoring needs to be more sys- tematic and part of a daily routine. Activities for monitoring, such as checking blood sugar for patients with diabetes, tracking blood pressure for patients with hypertension, and monitoring anger levels in patients with schizophre- nia, help to achieve physical and emotional stability. Three criteria are required for effective self-care monitoring: fi rst, clinically signifi cant changes in the con- dition must be possible over time; second, a method of reliably detecting these changes must exist; and third, a reasonable action must be possible in response. These three criteria are requisite for effective self-care monitoring.
The monitoring of symptoms is effective when the person or an informal caregiver is able to both recognize and interpret the sign or symptom. In other words, only checking for changes in symptoms or signs without interpret- ing the meaning or signifi cance of the change is not suffi cient. Interpreting symptoms is a challenge for patients with a chronic illness when the illness infl uences their interoception or the ability to perceive internal sensations such as pain (e.g., sensory neuropathy in persons with diabetes). Cognitive dysfunction is another condition that can make symptom interpretation chal- lenging because of diffi culties remembering or interpreting. Individuals with depression may also have distinct problems in monitoring for changes due to impaired motivation.
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Self-care monitoring includes both the process of collecting information about a certain aspect of self-care by objective observation (e.g., blood sam- pling for blood glucose or coagulation time, weighing, peak expiratory fl ow) or subjective observation such as body listening by noting that something is wrong and interpreting the meaning of the change. In the recently revised and updated Situation-Specifi c Theory of Heart Failure Self-Care (Riegel et al., 2016), which created the foundation for the middle range theory of Self-Care of Chronic Illness, this self-monitoring process is referred to as symptom percep- tion, which involves both the detection of physical sensations through moni- toring and the interpretation of their meaning. Symptom perception processes may be unique to heart failure, so for this middle range theory, the generic behavior of monitoring was used.
Self-care management is the response to occurring signs and symptoms. Self- care management involves an evaluation of changes in physical and emotional signs and symptoms to determine if action is needed. These changes may be due to illness, treatment, or the environment. In this context, situation aware- ness involves alertness to bodily sensations (somatic awareness or perception) and the ability to reliably determine how these sensations change in response to treatments. Those who are managing self-care comprehend the meaning of changes and are able to mentally simulate options and decide on a course of action (Riegel, Dickson, & Topaz, 2013). If a response is needed, self-care man- agement requires that a treatment be implemented and then evaluated as a method to determine an effective treatment.
Treatments are often specifi c to the signs and symptoms of a particular chronic illness. For example, shortness of breath due to asthma or chronic obstructive pulmonary disease may require use of a bronchodilator but shortness of breath due to heart failure may require taking an extra diuretic. Another important point about self-care management is that it can be done autonomously or in consulta- tion with a healthcare provider, depending on the messages the patient is given by the provider about independent modifi cations of therapies. With heart fail- ure patients, some providers encourage patients to titrate their own diuretics but other providers require that the patient call the offi ce for direction. Persons with diabetes who take insulin routinely titrate their medication based on meals and exercise. Self-care management requires attention to the effectiveness of a treat- ment to evaluate whether or not that approach should be tried again in the future.
■ RELATIONSHIPS AMONG THE CONCEPTS: THE MODEL
As illustrated in Figure 16.1, the self-care process begins with self-care main- tenance, a process that is generally less complex than the decision making
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required of self-care management. Expertise in self-care maintenance often leads to skill in self-care monitoring but mastery of self-care maintenance does not always precede that of self-care monitoring. The relationship between self-care monitoring and management is that monitoring may lead to self- care management or management could stimulate engagement in self-care monitoring.
Self-care is the overarching concept built from the three key concepts of self-care maintenance, self-care monitoring, and self-care management. The three concepts are closely related; therefore the performance of suffi cient self-care encompasses all three behaviors. For example, when managing symptoms that worsen, a person has to perform suffi cient symptom moni- toring. Self-care monitoring is thought to be the link between self-care main- tenance and self-care management; however, research is needed to confi rm this proposition. These behaviors and activities of self-care maintenance, self-care monitoring, and self-care management do not always take place in the same linear order and certain behaviors might be skipped in some situ- ations. That is, patients are not always consistent in their behaviors. They might choose to perform suffi cient self-care related to one illness, but ignore another (Dickson, Buck, & Riegel, 2011). Reasons for this inconsistency have been suggested to be related to confi dence or the belief that one illness is more important than another (Buck, Dickson, et al., 2015; Dickson, Buck, & Riegel, 2011, 2013).
FIGURE 16.1 Self-Care of Chronic Illness. Source: Reprinted with permission from Riegel, B., Jaarsma, T., & Stromberg, A. (2012). A middle range theory of self-care of chronic illness. Advances in Nursing Science, 35, 194–204.
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Relationship Between Self-Care Maintenance and Self-Care Monitoring
In previous work that was specifi c to heart failure patients (Riegel et al., 2010), self-care monitoring was included in the concept of self-care maintenance since daily weighing was seen as treatment adherence. This also can be seen in per- sons with diabetes self-care where monitoring of blood sugar is seen as treat- ment adherence. However, self-care maintenance and self-care monitoring are different behaviors and other skills might be needed to perform each one suf- fi ciently. One of the propositions of this middle range theory is that mastery of self-care maintenance precedes that of self-care management because self-care maintenance is less complex than the decision making required for self-care management. Admittedly there are some conditions that require exceedingly complex self-care maintenance (e.g., medication adherence for HIV or organ transplantation), but overall we believe that self-care management is more complex than maintenance because of the decision-making process (Riegel et al., 2013). This does not mean that self-care monitoring cannot be performed without self-care maintenance. In other words, patients could be vigilant in observing their symptoms, but at the same time not be adherent to their medi- cal therapy or their diet. However, in general there is a relationship between self-care maintenance and self-care monitoring. We have found that patients who diligently engage in self-care maintenance tend to be the same people who are observant of their signs and symptoms (Riegel, Vaughan Dickson, Goldberg, & Deatrick, 2007).
Relationship Between Self-Care Maintenance and Self-Care Management
The relationship between self-care maintenance and self-care management is that if one event occurs the other is also likely to occur (Walker & Avant, 2011). Self-care management is more complex than self-care maintenance, so mastery of self-care maintenance is thought to precede mastery of self-care manage- ment, as noted previously. Specifi cally, if a person engages in self-care main- tenance by eating a healthy diet and staying physically active, then it is more likely that this person will engage in self-care management (Riegel et al., 2007). In other words, if someone adheres to therapy they probably also perform (or want to perform) behaviors to manage their symptoms. This relationship is positive in that the behaviors tend to increase together or in sequence. The relationship is asymmetrical because it is rare for someone to master self-care management before self-care maintenance.
Relationship Between Self-Care Monitoring and Self-Care Management
The type of relationship between self-care monitoring and self-care manage- ment is that one set of behaviors leads to the second one. Self-care monitor- ing is necessary for self-care management in that a decision about a change must fi rst be noticed and evaluated (Riegel et al., 2012). For individuals with a
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chronic illness, recognition of a sign/symptom begins the process of decision making about what action is needed. When signs and symptoms are detected early and their seriousness is understood, action can be taken before the situa- tion escalates. It is known that some patients dutifully monitor themselves, but do not know what to do with the information they gather. Others know what to do but choose not to do it. Still others monitor and do not detect anything that needs to be managed.
In summary, the three concepts of self-care maintenance, self-care monitor- ing, and self-care management refl ect a sequence in which the behaviors are logically related to each other. Self-care functions well when all the behaviors related to the concepts are performed. However, for a variety of reasons, ele- ments of the process are often skipped, leading to problems in the successful performance of self-care for people with chronic illness.
■ USE OF THE THEORY IN NURSING RESEARCH
The middle range theory of Self-Care of Chronic Illness was published in 2012. Since publication, 50 articles from all continents except Africa have cited the theory. Most authors use the defi nition of self-care and its components to frame their thinking when stating a rationale for a study or when discussing their fi ndings. However, to date no one has empirically tested propositions of the theory. One interesting article by Wärdig et al. (Wärdig, Bachrach-Lindström, Foldemo, Lindström, & Hultsjö, 2013) exploring the prerequisites for a healthy lifestyle as described by individuals diagnosed with psychosis discussed the implications of the theory in individuals with severe mental illness. Although agreeing with our statement that it may be diffi cult to engage individuals with severe mental illness in self-care, they found that the individuals with psycho- sis were motivated and wanted to try to perform self-care.
Some researchers have used the theory for developing a new framework, theory, or model. For example, Beacham and Deatrick (Beacham & Deatrick, 2013) used the theory as a framework for self-care in children. They linked self-care maintenance, monitoring, and management to healthcare autonomy and outlined the usefulness of the theory for children and their families. Other researchers have used the theory to guide development of interventions as well as instruments measuring self-care in various conditions, for example, hypertension (Dickson, Lee, Yehle, Abel, & Riegel, 2017).
■ USE OF THE THEORY IN NURSING PRACTICE
This middle range theory is intended to be used in a variety of chronic con- ditions during the process of maintaining health through health-promoting practices, monitoring, and managing illness. At this point a systematic review
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is needed in order to refi ne the theory further, judge its clinical relevance, and develop implications for clinical practice. Such a review should assess studies using the theory, case reports, and expert-based evaluations to inform users on how the theory is being applied in different chronic conditions. So far the theory has been used in research with chronic illnesses in general and in a wide variety of specifi c chronic conditions including Parkinson’s disease, psychosis, infl ammatory bowel disease, diabetes, sickle cell disease, chronic obstructive pulmonary disease, coronary heart disease, hypertension, and childhood obe- sity. It has been used in heart failure patients with cardiac resynchronization devices and with left ventricular assist devices. However, clinical reports of implementation in clinical practice are still scarce. A good example of how the theory can be applied in clinical practice (Kato, Jaarsma, & Ben Gal, 2014) uses the theory as a framework for educational initiatives in patients with a left ventricular assist device. Two reports from the Heart Failure Association of the European Society of Cardiology and one from the Canadian Cardiovascular Society Heart Failure Guidelines used the theory to describe the importance of self-care in clinical practice (Cowie et al., 2014; Howlett et al., 2016; Ponikowski et al., 2014).
Caregivers are known to play an important role in supporting self-care in persons suffering from chronic conditions. A systematic review of caregivers (Buck, Harkness, et al., 2015) of patients with heart failure used the middle range theory as a framework to categorize the contribution of caregiver activi- ties into support for self-care maintenance, monitoring, and management. The authors stated that the use of the theory made their analysis more systematic and coherent as well as provided a benchmark against which the contribu- tion of self-care promoting caregiver activities could be determined (Buck, Harkness, et al., 2015). The success of using the theory as an organizing frame- work provided some evidence for its utility in clinical practice.
Another element with strong implications for clinical practice is refl ec- tion, noted in the original publication as a variable infl uencing the decision- making process (Riegel et al., 2012). In persons with insuffi cient self-care it is important for healthcare professionals and patients to jointly explore the barriers to self-care and address how to overcome them. Refl ection is thought to be key to successful self-care because refl ection involves consid- ering the usefulness of a behavior, vigilance in performing it, and an ongo- ing evaluation of its associated benefi ts and effectiveness. To reach the goal of refl ective and suffi cient self-care a person needs to have both the motiva- tion to do it and the knowledge about what to do. In some patients, both are lacking but others lack either knowledge or motivation. Moving from unre- fl ective to refl ective suffi cient self-care often requires more knowledge and skills (Dickson & Riegel, 2009). When moving from refl ective insuffi cient self-care to refl ective suffi cient self-care there is a need to increase motiva- tion (Masterson Creber et al., 2016).
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The three cornerstones of evidence-based nursing are: use of the best evi- dence available, clinical judgment, and patient experience/preferences. These are all important areas to use when supporting patients to increase self-care. Adherence to therapies that are evidence-based is associated with the best out- comes (Tan, Chinnappa, Tan, & Hall, 2011). The goal for healthcare providers is to work collaboratively with patients to negotiate the adoption of as many of the advocated behaviors as the patient can tolerate and accept, with an empha- sis on those therapies with the best evidence to support them. We currently have evidence for some specifi c self-care areas such as medication adherence (Golshahi et al., 2015), exercise training in some chronic conditions (Button, Roos, Spasic, Adamson, & van Deursen, 2015), and diet for certain diseases (e.g., diabetes, celiac disease; Austin et al., 2013). In other areas, healthcare professionals have clinical experience that infl uences their recommendations. Patients often have self-care knowledge based on personal experience about what self-care behaviors are effective. This knowledge must be respected but providers should emphasize mainstream behaviors (e.g., medications known to improve outcomes) rather than behaviors that lack evidence of effects, fail to provide consistent benefi t, or may even be harmful (e.g., certain nutritional supplements, herbal products, or restriction in lifestyle or daily life).
■ USE OF THE THEORY IN NURSING EDUCATION
The middle range theory of Self-Care of Chronic Illness is used in courses taught at the University of Pennsylvania (Penn) School of Nursing and Linkoping University, Division of Nursing. At Penn, a course on self-care is offered to undergraduate students. Students and faculty discuss the history, defi nitions, predictors, and outcomes of self-care in various chronically ill populations. Factors (e.g., illness, physiological, treatment regimen, psychological, social, and cultural) that infl uence how well patients make the transition from health to illness and the performance of self-care behaviors are explored. Students examine what constitutes skilled self-care, the many forces that infl uence this behavior, and how best to address these forces to prepare them for their role in promoting patient self-care. Fieldwork experiences in the community enable students to gain practical experience in engaging chronically ill individuals in discussions about self-care.
At Linkoping University the theory is presented to all undergraduate and master students when studying chronic illness, representing the theory as a framework useful in understanding and supporting patients in self-care. Students often use the theory in bachelor and master theses. In the doctoral program in nursing science, the theory is presented and analyzed among other self-care theories during a course focused on developing an in-depth under- standing of self-care in relation to chronic illness. The course introduces the
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history, defi nitions, predictors, measurement, and outcomes of self-care to provide a broadened perspective of the self-care construct, theories and mod- els, and various issues that patients face when dealing with chronic illness. Students write a paper in which they develop or modify a conceptual model/ theory of self-care in relation to a chronic illness of their choice. The paper is intended to motivate the use and application of a model/theory in the cho- sen patient group and refl ect on its value, strengths, and weaknesses. Then they describe how they might intervene to modify barriers to self-care (i.e., develop an intervention) and describe how that intervention might be tested in research. This assignment stimulates students to apply a self-care theory/ model and think about how it could be used in research.
It is now 5 years since the middle range theory of Self-Care of Chronic Illness was fi rst published. The theory has gained attention and clearly fulfi lled the expressed need for a theory of chronic illness that is not disease-specifi c. The theory has been cited in numerous publications and used to develop instru- ments measuring self-care of hypertension, diabetes, and coronary heart dis- ease. We have validated a generic instrument measuring self-care maintenance, self-care monitoring, and self-care management in people with any chronic illness. It is still too early to fully judge the clinical relevance of the theory. Although it has already been used in research in a wide variety of chronic con- ditions, the experiences and conclusions of these studies have not yet been sys- tematically analyzed and summarized. Doing so will illustrate how effectively this theory is guiding evidence-based practice.
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