Self-Management of Illness in Adults
Barbara Riegel, Victoria Vaughan Dickson, and Christopher S. Lee
Self-management refers to the day-to-day management of chronic conditions by individuals over the course of an illness (Lorig & Holman, 2003). A variety of terms are used to capture this behavior: self-management, self-care, and self-monitoring are some of the most common terms (Grady & Gough, 2014). In our work, we use self-care as an umbrella term to capture both self-management and healthy lifestyle behaviors or maintenance (Figure 8.1). The management element of our work reflects the process described by Grady and colleagues (Grady & Daley, 2014; Grady & Gough, 2014) and is the focus of this chapter. Here we describe the evolution of our research and how that research has influenced policy in the United States and internationally.
Interest in self-care grew out of Riegel’s early experiences as a clinical nurse researcher at Sharp HealthCare in San Diego, California, between 1990 and 2002. Upon completion of a doctoral degree at the University of California at Los Angeles, she assumed responsibility for clinical research in the cardiovascular service line. Although now heart failure (HF) is recognized as an exceptionally prevalent and expensive condition (Heidenreich et al., 2013), in the early 1990s hospitals were not yet aware that these patients were being rehospitalized repeatedly. After publication of a monograph from the Cardiology Preeminence Roundtable in 1994 (Cardiology Preeminence Roundtable, 1994) and publication of a seminal study describing a successful multidisciplinary HF disease management study in 1995 (Rich et al., 1995), Riegel pursued funding for a similar multidisciplinary disease management study to be conducted at Sharp HealthCare. After early internal resistance to the idea reflecting the “fill the beds” mindset of the times, Riegel received funding from Merck Foundation to conduct a small trial (Riegel, Carlson, Glaser, & Hoagland, 2000).
FIGURE 8.1 Model of heart failure self-care. In this model, self-care maintenance is the foundation of effective self-care management. Self-care maintenance and management are connected through the process of symptom monitoring, which is the prerequisite for symptom recognition and subsequent steps in the process of self-care management.
Source: Riegel, Lee, and Dickson (2011).
As Riegel and colleagues designed their multidisciplinary disease management intervention, they pondered the mechanism underlying the intervention. During discussions with nurses, physicians, pharmacists, dieticians, social workers, and physical therapists, it became clear that each element of the intervention approach focused on helping patients with this chronic illness to take better care of themselves (Riegel, Thomason, et al., 1999). Measuring the mechanism of HF self-care in our disease management trial was critical—but at that time there was no instrument measuring HF self-care in the manner in which we defined it. Riegel decided to devise such a measure and in doing so started a long career focused on the development of self-care theory and measurement.
THEORY AND MEASUREMENT DEVELOPMENT
Early efforts in understanding self-care evolved from discussions with clinicians. The nurses described how adults with HF commonly retained 20 to 30 pounds of fluid in their legs before seeking care. Patients who recognized their early signs (e.g., weight gain) and symptoms (e.g., shortness of breath), knew that these changes were abnormal, and did something about it (e.g., call the physician, take an extra diuretic) were most likely to avoid hospitalization. Literature from other patient populations suggested that patients who evaluated the success of behavioral strategies were most likely to become experts in self-care (Paterson & Thorne, 2000a, 2000b). This assessment of the process engaged in by patients resulted in a linear model delineating four stages of management: recognizing a change in signs and symptoms, evaluating the change, implementing a treatment strategy, and evaluating the treatment.
After specifying our vision of the self-management process, in 1995 Riegel engaged an advanced practice nurse to telephone HF patients to assess content validity of the proposed process. She telephoned 25 patients and engaged them in a discussion of their thoughts and decisions surrounding signs and symptoms (Riegel, Carlson, & Glaser, 2000). Those discussions confirmed the four-step process described earlier. Following each semistructured interview, patients were engaged in a discussion to determine if additional stages were involved in self-management. Lack of confidence in the ability to manage symptoms was repeatedly identified as a barrier to treatment success. Confidence did not appear to be a stage of management itself, but rather an important factor influencing self-management ability.
Measurement of these concepts was the ultimate goal, and the original measurement effort produced a 65-item instrument with six subscales measuring the self-management of signs and symptoms of HF (Riegel, Carlson, & Glaser, 2000). The subscales measured the four stages of management described earlier (recognize a change in signs and symptoms, evaluate the change, implement a treatment strategy, and evaluate the treatment) as well as ease in evaluating signs and symptoms and confidence in the ability to self-manage. Early psychometric properties were promising, but six different symptoms were included; few patients have all six symptoms, so a skip-pattern format was used, which was confusing to patients and complicated for scoring.
In 1999, the concept of maintenance was added to the model to reflect patients’ efforts to stay healthy and avoid symptoms. Self-care maintenance reflected primarily adherence to treatments and lifestyle recommendations intended to maintain physiologic stability (Figure 8.2). An important element of self-care maintenance is medication adherence, a behavior we have focused on in recent years (Dickson, Knafl, & Riegel, 2015; Knafl & Riegel, 2014; Riegel & Dickson, 2016; Riegel & Knafl, 2014; Riegel, Lee, et al., 2012; Riegel, Moelter, et al., 2011; Wu et al., 2009). At that point we began referring to the process as self-care with both maintenance and management components. Self-care management did not change from our early work described previously.
FIGURE 8.2 Visual depiction of the self-care process. Self-care is defined as a process of maintaining health through treatment adherence and symptom monitoring. When signs and symptoms occur, decision making of self-care management is required. Self-care is positively influenced by self- confidence in one’s abilities.
Source: Riegel, Carlson, et al. (2004). Used with permission of Elsevier Publishers.
In this early work, self-care was defined as a rational process involving purposeful choices and behaviors that reflected knowledge and thought (Riegel, Carlson, & Glaser, 2000). Although we referred to naturalistic decision making, we focused on attention, inference, and judgment—elements of a logical decision-making process. When we published the situation-specific theory of HF self-care in 2008 (Riegel & Dickson, 2008), we de-emphasized logic and emphasized self-care as a naturalistic decision-making process involving the choice of behaviors that maintain physiologic stability (maintenance) and the response to symptoms when they occur (management).
Soon after publishing the 65-item self-management of HF scale, we began work on a shorter version addressing the entire construct of self-care (i.e., maintenance, management) and confidence in the ability to perform self-care. The major change that allowed us to shorten the instrument was a focus on one symptom, shortness of breath, which is experienced by most adults with HF. Our effort to shorten the scale resulted in the Self-Care of Heart Failure Index (SCHFI) with three scales (Riegel, Carlson, et al., 2004). The version of the SCHFI published in 2004 was a 15-item instrument using a 4-point response scale. Scores on each scale were standardized to a 0–100 score. This instrument was updated in 2009 as version 6.2 (Riegel, Lee, Dickson, & Carlson, 2009). Major changes in 2009 were the addition of items to the maintenance and confidence scales. The scoring procedure was refined and the formula for computing standardized scores was improved. A cut point for adequacy of self-care was specified (i.e., ≥ 70 on the standardized score). When internal coherence reliability of the SCHFI scales was assessed with factor score determinacy, maintenance coefficients ranged from .75 to .83, management ranged from .68 to .76, and confidence ranged from .84 to .90 (Barbaranelli, Lee, Vellone, & Riegel, 2014, 2015). Construct and predictive validity have been demonstrated. We have made the SCHFI freely available to anyone who wishes to use it by posting it on our website: www.self-careofheartfailureindex.com. Currently there are 18 foreign-language versions freely available to users, along with local contact users.
After publishing the situation-specific theory of HF self-care in 2008 (Riegel & Dickson, 2008), researchers began e-mailing with requests to use the model for other conditions. Subsequently, Riegel and colleagues published a middle range theory of self-care of chronic illness where self-care was defined as a process of maintaining health through health-promoting practices and managing illness, noting that self-care is performed in both healthy and ill states (Riegel, Jaarsma, & Stromberg, 2012). Again, naturalistic decision making was noted as the process used to make self-care decisions. A key difference in the middle range theory was the addition of monitoring as a key conceptual element. The theme of symptom monitoring was picked up again in the revised and updated situation-specific theory of HF self-care where self-care was operationally defined as a process of: (a) maintenance; (b) symptom perception; and (c) management (Figure 8.3; Riegel, Dickson, & Faulkner, 2015). The addition of symptom perception focuses on the observations that persons with HF do not respond rapidly to their early symptoms. We suspect that the difficulty in perceiving symptoms may be related to age-related changes in interoception (Riegel, Dickson, Cameron, et al., 2010). We have now devised an instrument that measures self-care of HF in a manner consistent with the updated theory and one that measures self-care of chronic illness in general; those instruments are currently in psychometric testing.
Since these early efforts, we have continued to study self-care (both maintenance and management) in adults with chronic illness including HF. In what follows, we summarize our research conducted to date and then discuss the influence of this program of research on policy in the United States and internationally.
FIGURE 8.3 Illustration of the relationship between self-care management and outcomes.
Note. On a standardized scale ranging from 0 (indicating the worst self-care management) to 100 (indicating the best self-care management), different levels of heart failure self-care management were associated with improvements in health outcomes, and changes in the odds of having higher levels of biomarkers of myocardial stress and systemic inflammation. That is, patients engaged in low levels of self-care management may benefit by having less myocardial distension and inflammation, whereas patients who have levels of self-care management above 40 will likely have improvements in perceived health. Those who are engaged in above-average self-care management cut their chances of being hospitalized or dying in half, and are much less likely to have episodes of preclinical congestion than patients engaged in poor self-care management. Patients engaged in above-average self-care management who have episodes of congestion experience them less frequently and in shorter duration than patients who practice poor self-care management. Those who improve in HF self-care management to above a score of 60 have significant and clinically meaningful improvements in quality of life compared with patients who decrease in their self-care management over time in whom quality of life does not change. Patients engaged in the best self-care management perceive their health as being better than the general well population.
HRQL, health-related quality of life.
SELF-MANAGEMENT IS CHALLENGING
Through the years we have demonstrated repeatedly that HF self-management is difficult for patients to master. Most patients experience multiple symptoms, yet their knowledge of the importance of signs and symptoms is often poor, early recognition is difficult, and misperceptions are common (Carlson, Riegel, & Moser, 2001). When we explored in focus groups how HF influenced patients’ lives, how they performed self-care, and how their life situations facilitated or impeded HF self-care, we identified physical limitations, debilitating symptoms, difficulties coping with treatment, lack of knowledge, emotional distress, multiple comorbidities, and personal struggles that impeded self-care. Atypical symptoms such as faintness were rarely attributed to HF (Riegel & Carlson, 2002).
Evolution of Expertise
The development of expert in self-management is important. Using latent class mixture modeling, we identified three distinct profiles of self-management (novice, inconsistent, and expert). As physical symptoms worsened, self-management improved (Lee, Gelow, et al., 2015). These results are consistent with those found repeatedly over the years: Persons with HF rarely perform self-care when they are asymptomatic; as symptoms worsen over time, self-care improves (Riegel, Lee, & Dickson, 2011). We attribute this observation to changes in experience and attitude. Experience with symptoms and responses leads to mastery for some patients (Carlson et al., 2001; Riegel, Lee, et al., 2011). An attitude that is receptive to the need for self-care is also necessary. Persons with negative attitudes rarely master self-management (Dickson, Deatrick, & Riegel, 2008). Fighting against the need to deal with symptoms lowers the odds of developing expert-level management behaviors.
Many of the themes we identified in the early years have been explored in detail in subsequent years. In a series of descriptive, exploratory, and comparative studies, we have confirmed that multimorbidity greatly impairs the ability of adults with HF to perform self-care (Bidwell et al., 2015; Buck et al., 2015; Dickson, Buck, & Riegel, 2013). Individuals with multiple comorbid conditions report difficulty differentiating HF symptoms from those of other conditions (Dickson, Buck, & Riegel, 2011) and lack confidence in their ability to implement treatment (Dickson et al., 2013). Impaired cognition, found in 25% to 50% of HF patients (Gure et al., 2012), is one particularly challenging condition that interferes with self-care (Bidwell et al., 2015; Dickson et al., 2008; Dickson, Tkacs, & Riegel, 2007; Lee et al., 2013). Yet, confidence in the ability to perform self-care appears to promote successful maintenance and management, even when cognition is impaired (Vellone et al., 2015). This is exciting work because few interventions successfully improve cognition—but perhaps we can address confidence and thereby improve self-care in these patients.
Race, Ethnicity, and Social Norms
Blacks with HF have different and more risk factors than Whites for poor medication adherence (maintenance; Dickson et al., 2015), but racial differences in management have not been found. Rather, cultural beliefs and social norms that vary by ethnic group influence day-to-day decisions about both self-care maintenance and management practices (Dickson, McCarthy, Howe, Schipper, & Katz, 2013). For example, in a mixed-methods study examining the sociocultural influences on self-care in an ethnic minority Black population with HF, we reported that the cultural meaning ascribed to HF, symptoms, and perceived role (Dickson, Kuhn, Worrall-Carter, & Riegel, 2011) in performing self-care influence how patients respond (Dickson et al., 2013). Similarly, although social support is known to promote self-care (Bidwell et al., 2015; Sayers, Riegel, Pawlowski, Coyne, & Samaha, 2008), social norms may interfere with a willingness to access social support, including help with daily self-care practices. Low-income ethnic minority patients reported difficulty with dietary adherence due to a conflict with cultural food preferences, cooking techniques, and family roles (Dickson et al., 2013).
Gender-specific differences in self-care behaviors are minimal (Bidwell et al., 2015; Lee, Riegel, et al., 2009). However, gender-specific barriers and facilitators greatly influence the choice of self-care behaviors (Riegel, Dickson, Kuhn, Page, & Worrall-Carter, 2010). Specifically, there are distinct gender differences in the decisions made in interpreting and responding to symptoms. Men may be better than women at interpreting their symptoms as being related to HF and in initiating treatment. Gender differences may also simply reflect differences in social support, confidence, and mood (Riegel, Dickson, Kuhn, et al., 2010). Self-care of HF has been studied more extensively in men compared with women; hence, there is more work to be done to gain insight into the role of gender in self-care.
SELF-MANAGEMENT INFLUENCES OUTCOMES
For some time now, we have known that interventions designed to enhance HF self-care maintenance generally reduce rates of HF hospitalization (Ditewig, Blok, Havers, & van Veenendaal, 2010; Jonkman et al., 2016; Jovicic, Holroyd-Leduc, & Straus, 2006; McAlister, Stewart, Ferrua, & McMurray, 2004). In contrast, there is limited evidence of the influence of self-care management on health outcomes of any type. To tackle this critical knowledge gap, we engaged in a collaborative research endeavor to first put forth hypothetical mechanisms by which HF self-care management might influence outcomes and second to generate foundational empirical evidence to support our hypotheses. Based on an extensive synthesis of knowledge on HF self-care and cardiovascular pathogenesis, our overarching hypothesis was that effective HF self-care maintenance and management were cardioprotective and complementary to medical management in improving outcomes (Lee, Tkacs, & Riegel, 2009). Specifically, we proposed that effective HF self-care would (a) facilitate partial blockade and partial deactivation of deleterious neurohormones, (b) limit inflammatory processes, (c) decrease the need for pharmacological agents that may be detrimental, and (d) minimize myocardial hibernation (Lee, Tkacs, & Riegel, 2009). Having disseminated our hypotheses in 2009, we moved on to generating the empirical evidence in support of these hypotheses with an intentional focus on self-care management behaviors, about which we knew the least.