Self-care has a dubious reputation among some clinicians. Legions of master's students exposed to coursework in nursing theory learned about Orem's theory of self-care-a grand theory with depth and breadth but esoteric terms and obscure concepts that have proven difficult to translate directly into clinical practice. However, the basic idea of engaging patients in their own care resonated with most nurses. After all, it is patients who must live with their illnesses, take their medicines, change their lifestyles, and make decisions about their symptoms.
Over the past 30 years, self-care has emerged as an ideology used by political and health consumer activists. At the same time, healthcare providers significantly decreased the time spent in individual patient encounters and became less available to oversee the day-to-day care regimen. Then, in the 1980s, health professionals began to study self-care, and self-care surfaced as an essential ingredient in successful disease management.1 Now, more than 25,000 articles on the topic have been published in the medical literature. The purpose of this article is to describe and validate a situation-specific theory of heart failure self-care that may prove useful to clinicians and scientists alike.
Theory can be defined as a coherent set of verified relations useful for explanation and prediction and, consequently, for control.2 Im and Meleis3 distinguish among grand, middle-range, and situation-specific levels of theory. Grand theories, like Orem's theories of self-care deficit and self-care agency,4 are organized, coherent, and systematic articulations explaining a large set of phenomena. Middle-range theories are more limited in scope and abstraction.
Situation-specific theory focuses on specific clinical phenomena seen in practice.3 Compared with grand and middle-range theories, situation-specific theories are more concrete and less abstract. They are limited to specific situations and/or specific populations. As such, a situation-specific theory is not universal or generalizable to other situations. Im and Meleis3 propose an integrative approach to the development of situation-specific theories. Crucial elements include a nursing perspective; a clear link among the theory, research, and clinical practice; and a conceptual scheme based on abstract thinking, memo or journal writing, and dialogue with colleagues, students, and research participants.
Others have developed situation-specific theories. In fact, when PubMed was searched using the term situation-specific theory, with only the limits of human and English language, 182 articles published between 1975 and 2007 were identified. When clinical was added to the search terms, 47 relevant articles were located. For example, Ohlen and colleagues5 developed a goal-oriented practice theory for enabling the safety of relatives of adult patients close to end-of-life. The theory was developed through triangulation of existing empirical research, clinical experience, and theoretical reasoning. The resulting theory, based on the work of philosopher Paul Ricoeur, focuses on relatives in the context of patients' end-of-life care. Four theoretical principles described are the professional's approach and attitude, the relative's concern for the patient, the specific situation for the relative, and the patient's end-of-life as a period in the life of the relative.
Although not described as situation-specific theory, others have described their work in self-care with specific patient populations. Dodd,6 for example, described self-care in persons with cancer undergoing chemotherapy. Historically, oncology patients waited until adverse effects were severe or persistent, believing that enduring the discomfort was expected or a necessity. Dodd argued that self-care was an essential, proactive, learned behavior performed by patients needing to prevent or respond to the adverse effects of chemotherapy. Her situation-specific theory and long program of research have changed the self-care behavior of oncology patients worldwide. In another example, Leenerts and colleagues7 described self-care as a means to promote health and well-being as people age. They described the ability to perform self-care as influenced by readiness to care (eg, problem-solving orientation), repertoire in caring (eg, healthy lifestyle), and the internal (eg, motivation) and external (eg, cultural context) environment.
The work by these investigators has greatly enhanced our understanding of self-care as a process performed by patients with the support of clinicians. That is, although self-care is ultimately a patient responsibility, it is performed most effectively with the support of clinicians who coach and support patients.1 It would be extremely unusual for a person with a chronic illness as complex as heart failure to master self-care without the guidance of a nurse. Nurses help patients learn how to monitor and interpret symptoms, set priorities, and make decisions about their care. Others have used terms such as self-observation, symptom perception and labeling, judgment of severity, treatment consultation, choice of assessment and treatments, and symptom outcome to capture this process of self-care.8-10
One confusing element of the self-care literature is the use of varied and inconsistent terminology. Self-care, self-management, self-monitoring, self-regulation, adherence, and compliance are all used interchangeably, often within the same source. Self-management is probably the term used most consistently as a synonym for self-care. Creer and colleagues11 were some of the first authors to use the term self-management to describe patients who actively participate in treatment. Others have used self-management to describe patients who make therapeutic, behavioral, and environmental adjustments in line with professional advice.12 Lorig and Holman13 defined self-management as a process aimed at helping patients maintain a wellness perspective by engaging in a set of tasks: medical management, behavioral management (maintaining, changing, and creating new meaningful behaviors or life roles), and emotional management (dealing with the emotional sequelae of having a chronic condition).
In comparing and contrasting definitions of self-management and self-care, Wilson et al14 noted that definitions of self-management are more specific than those of self-care. Self-care has been referred to as "…the things people do because of…[a health problem]."15 Both self-care and self-management involve a proactive process, compliance with professional advice, close attention to one's body, and appropriate coping behavior. Wilson et al14 argue that the key difference between self-management and self-care is that in self-management, patients undertake tasks that are the traditional province of professionals, such as prescribing drug dosages.
Self-monitoring is another term frequently used interchangeably with self-care. Wilde and Garvin16 analyzed this concept and found that self-monitoring is composed of 2 complementary components or attributes: (1) awareness of bodily symptoms, sensations, daily activity, and cognitive processes; and (2) measurements, recording, and observations that inform cognition or provide information for independent action or consultation with care providers. They described self-care as a strategy done to achieve a high level of self-management. In their analysis, the term self-care was used relatively less often and was mostly included under discussions of self-management. This summary of the conceptual disarray surrounding the term self-care demonstrates the need for more attention to the terms that we use to describe these activities.
Self-Care of Heart Failure
The situation-specific theory described here evolved from our early conceptual model, which was codified for the purposes of instrument development.17 In persons with heart failure, repeated hospitalizations have been attributed to failed self-care,18,19 so our efforts to decrease the hospitalization rate focused on improving self-care. In that early work, self-care was defined as a rational process, involving purposeful choices and behaviors, reflecting knowledge and thought. Key concepts in the conceptual model were maintenance and management.
Self-care maintenance reflects behavior used to maintain physiologic stability-symptom monitoring and treatment adherence. The selective attention that occurs with symptom monitoring is crucial for recognizing and interpreting symptoms. Treatment adherence, a component of self-care,14 involves following the advice of providers to follow the treatment plan and live a healthy lifestyle.
Self-care management refers to the decision-making response to symptoms when they occur. Self-care management is an active, deliberate process that is essential in heart failure if patients are going to control the precarious balance between relative health and symptomatic heart failure. Five stages of management were described: recognizing a status change (eg, new swelling), evaluating the change in status, deciding to take action, implementing a treatment strategy (eg, taking an extra diuretic dose), and evaluating the treatment implemented (Figure 1). This definition of management is consistent with the definition of Wilde and Garvin,16 who define self-monitoring as encompassing bodily awareness, a concept similar to recognizing a change in status. It is also consistent with the work of Wilson et al,14 who note that in self-management, patients undertake tasks that are the traditional province of professionals, such as prescribing drug dosages. Once changes in signs and symptoms are recognized, a response must be decisive and timely. An assumption of the self-care management process is that patients who are able to recognize their symptoms will be better at subsequent steps in the process.
Since that early work, 2 major advances have occurred in our thinking. First, we questioned the rationality and critical thinking abilities of patients making decisions about symptoms. Naturalistic decision making20 was thought to better reflect the process by which people make decisions in real-world settings. Four characteristics exemplify naturalistic decision making: (1) focusing on process rather than outcome, (2) using decision rules that match the situation and the action, (3) letting context influence decision making, and (4) basing practical decisions on the empirical information available at the moment. Naturalistic decision makers rely on developed expertise to mentally simulate an action and anticipate how it will play out and less on normative models of rational behavior. The factors most influential in developing that expertise are knowledge, experience, skill, and compatibility with values (Figure 2).
The second major advance in our thinking is related to the concept of confidence. Initially, confidence was conceptualized as a component of self-care based on early pilot work where heart failure patients were interviewed about their self-care. In later discussions with colleagues, we came to see confidence as a mediator and/or a moderator of the relationship between self-care and outcomes rather than a core component of self-care itself. That is, a variety of hypotheses can be formulated about when (moderator) and how (mediator) confidence influences the relationship between self-care and outcomes. For this reason, we stopped adding the Maintenance, Management, and Confidence scales of the Self-Care of Heart Failure Index (SCHFI), described below, to form a total self-care index. Instead, we strongly advocate using the scales separately to describe the patients' skills in each separate component of self-care.
Building on the definition of theory as a coherent set of verified relations, in this section, several propositions are proposed and tested (see Table 1). Testing was facilitated by the availability of self-report data from patients who had completed the SCHFI.21 The SCHFI is a self-report measure composed of 15 items rated on a 4-point response scale and divided into 3 scales (Maintenance, Management, and Confidence) to reflect the conceptual model of heart failure self-care shown in Figure 1. Psychometric testing of the instrument was done using data from 760 persons with heart failure (mean [SD] age, 70.36 [12.3] years, 51% male) obtained from 7 sites in the United States. Reliability of the Maintenance scale was lower than desired (α =.56) presumably because of its short length and diverse range of items. However, the reliability of the other subscales was adequate: Management, α =.70, and Confidence, α =.82. Construct validity was supported with adequate model fit on confirmatory factor analysis (normed fit index = 0.69, comparative fix index = 0.73). Scores on each scale are standardized to 100; a standardized score of less than 70 on 1 or more of the 3 scales is thought to reflect poor self-care.
The first proposition tested was that symptom recognition is required for successful self-care management. Specifically, we hypothesized that the patients who were unable to recognize their symptoms would be unsuccessful in subsequent steps in self-care management. This hypothesis was tested first using data from a study of peer mentoring for heart failure.22 We trained 9 persons with heart failure to mentor 88 other heart failure patients and tested the effectiveness of this approach in a randomized controlled clinical trial. This sample of mentees was predominately elderly (mean [SD] age, 73 [12.6] years), female (56.7%), unmarried (62.9%), retired (81.4%), economically disadvantaged (48.1%), and educated at the high school level or above (87.7%). Most (80.5%) had a low or moderate level of comorbidity, with hypertension and diabetes mellitus being the most common comorbid conditions. More than half were severely compromised functionally (New York Heart Association [NYHA] class III or IV, 59.8%).
Using baseline data, participants (mentors and mentees) were categorized as having recognized their heart failure symptoms fairly quickly (n = 35) or not (n = 59) based on their responses to a specific item in the SCHFI. Multivariate analysis of variance was used to compare treatment initiation and treatment evaluation scores between the groups formed on the basis of symptom recognition. Treatment initiation and evaluation are component parts of the management scale, so raw scores from a scale of 1 to 4 were used in these calculations rather than scale scores standardized to 100. Treatment initiation scores were significantly higher in those who recognized their symptoms quickly versus those who did not (1.66 ± 0.94 vs 1.19 ± 0.54, respectively; F = 9.6, df = 1,92, P =.003). Treatment evaluation ability was higher as well, but the difference was not statistically different (3.23 ± 1.33 vs 2.78 ± 1.49; F = 2.2, df = 1,92, P =.15) because of the large standard deviation.
The second proposition tested was that self-care would be better in patients with more knowledge, skill, experience, and compatible values. We hypothesized that self-care would be better in patients with more knowledge and tested the hypothesis with quantitative data from a mixed methods study by Dickson.23 The sample of 41 patients with chronic heart failure was predominately male (63.4%), married (43.9%), white (68.3%), and educated at a high school level or above (90.2%). Participants were interviewed and assessed using various standardized instruments. Knowledge was assessed using the Dutch Heart Failure Knowledge Scale, a 15-item self-report scale reflecting knowledge about heart failure.24 The content of the items is based on established patient education guidelines of the Netherlands Heart Foundation, which mirror those of the American Heart Association. Each of the 15 items is followed by multiple choices, only one of which is correct. Content, face, and construct validities have been demonstrated. Internal consistency is adequate (.62).
Scores on the Dutch Heart Failure Knowledge Scale were divided into low (≤12) and high (>12) knowledge groups (12 was the mode in the data set), and self-care scores were compared in the groups. Self-care maintenance was higher in patients low in knowledge than in patients high in knowledge (72.6 ± 13.4 vs 70.5 ± 15.4, respectively), contrary to our prediction. But when self-care management was compared in low- and high-knowledge groups, results were in the hypothesized direction. Management was lower in patients low in knowledge than in those high in knowledge (67.8 ± 16.4 vs 74.8 ± 20.4, respectively), although the difference was not statistically significant.
In the same data set, self-care skill was assessed qualitatively using content analysis, and patients were classified as expert, inconsistent, or novice based on their skill level. Experts were all found to be adequate (standardized score ≥70%) in both self-care management and maintenance. None of the novices had adequate self-care as measured by the SCHFI. Specifically, maintenance (80.8 ± 12.0 vs 72.7 ± 13.3) and management (82.0 ± 10.8 vs 64.2 ± 16.8) were higher in experts than in patients judged to be novice in heart failure self-care.
In the next analysis, experience with heart failure was cut at the 2-month point. We have found in previous research that patients with heart failure have developed some expertise regarding how to care for the illness after about 2 months.25 Thus, we tested for differences in self-care scores in patients newly diagnosed (<2 months before) versus those with some experience with heart failure (diagnosed ≥2 months before).
In a trial of a disease management intervention, 134 Hispanic persons hospitalized with chronic heart failure were enrolled and randomized to receive telephone follow-up (n = 69) or usual care (n = 65).26 Bilingual Mexican American registered nurses provided 6 months of case management standardized using computer software. Self-care was measured using the SCHFI at enrollment and at 3 and 6 months in 129 patients. The sample was elderly (mean [SD] age, 72  years), 54% female, 60% married, and very poorly educated (78.4% with <high school education). Most (55%) patients were entirely unacculturated into the US society. Using data obtained at enrollment, there were significant differences in self-care management, with experienced patients reporting better management than inexperienced patients (63.1 ± 18.1 vs 55.2 ± 19.5, respectively; F = 4.5, df = 1,121, P =.04).
Personal values are implicitly related to choice; they guide decisions by allowing for an individual's choices to be compared to each choice's associated values. The influence of values on choices about self-care was assessed in the mixed methods study by Dickson23 described above. During interview, 36 of the 41 participants in the study voiced their values in relation to heart failure self-care: 55.6% had positive values, and 44.4% voiced negative values. For example, young patients discussed their drive to watch children grow up, experience life, and to not give up too soon. Others explained that they apply the same approach to their heart failure as they do with other adversities:
Just realizing what is important in life, kind of putting things in perspective, and placing the importance on family and friends and faith. You know just realizing I'm not going to be here forever, so I might as well do the best I can and take advantage of the opportunities I have, be thankful. I just think it's a gut check. Just thanking God for being here everyday.
When scores on the SCHFI were compared in persons expressing predominately positive versus negative values, there was a strong trend toward statistical differences between the groups. Self-care maintenance was higher in those with positive values compared with those with negative values (76.2 ± 12.9 vs 66.9 ± 14.8, respectively; F = 4.1, df = 1,34, P =.05). A similar picture was seen in self-care management (77.3 ± 18.6 vs 66.4 ± 18.1; F = 2.4, df = 1,34, P =.13) and self-care confidence (80.7 ± 12.8 vs 73.5 ± 14.9; F = 2.4, df = 1,34, P =.13).
Confidence as a Moderator
The next proposition we tested was that confidence moderates the relationship between self-care and outcomes. Specifically, we hypothesized that higher levels of heart failure self-care are associated with better economic outcomes, but only when confidence is high. This hypothesis was tested in the sample of Hispanic patients enrolled in the disease management trial described above.26
In a retrospective analysis of longitudinal data collected from the sample of 134 patients, hierarchical multiple regression analysis was used to identify the influence of self-care maintenance and management on heart failure inpatient costs at 6 months, controlling for age, sex, baseline NYHA functional class, ejection fraction, sodium level at enrollment, and history of diabetes and renal disease-factors all known to influence rehospitalization and cost. Self-care confidence was tested as a moderator of the relationship between self-care (maintenance and management) and heart failure inpatient costs.27 That is, we hypothesized that self-care would decrease costs, but only when self-care confidence was high.
The sample was 53.4% female with a mean (SD) age of 72 (11) years, mean (SD) ejection fraction of 43% (18%), mean NYHA functional class of 3.2, and a mean sodium level of 139.7 mEq/dL. Many (58%) had diabetes, and 6.7% had renal disease. When age, sex, baseline NYHA functional class, ejection fraction, sodium level at enrollment, and history of diabetes and renal disease were controlled, 24% of the variance in cost was explained (F = 3.7, P =.002). When self-care and confidence as a moderator were added in a second step, the model explained 43.4% of the variance in cost (F = 3.98, P <.001). Self-care management (β = 1,444.9, βs [standardized beta] = 2.11), self-care confidence (β = −104.8, βs = −0.13), and the moderating effect of self-care confidence on management (β = −15.3, βs = −2.38) were significant predictors (P =.004) of heart failure inpatient costs. This analysis provides strong preliminary evidence of the moderating effect of confidence on self-care management.
Confidence as a Mediator
Social support contributes to success in managing chronic illness. However, the mechanism by which this effect occurs has been debated for decades. We hypothesized that self-care confidence was a mediator between support and self-care in patients with heart failure (Figure 3). That is, we proposed that social support improves self-care confidence and thereby improves patients' abilities to perform self-care.
Cross-sectional data collected from 117 outpatients with heart failure recruited from the heart failure clinic of a large urban, university-affiliated medical center were analyzed in a secondary analysis. This sample had a mean (SD) age of 56 (14) years and were 41% female, 50% African American, and 50% married. Social support was measured with a single item asking, "How would you rate the quality of the support you receive from others?" and evaluated on a 4-point scale ranging from poor (1) to very good (4). Standardized scores on the SCHFI (self-care management and self-care confidence) were used in a standard mediator analysis done using linear regression analysis.
Most (94 of 117 or 80%) of the patients were symptomatic and had the opportunity to judge their ability to manage their heart failure symptoms. Self-care management scores were poor (mean [SD], 68.98 ), confidence was better (73.0 ), and support ratings were high (3.5 [0.7]) overall. Support was a significant determinant of self-care confidence (β = 8.2, βs = 0.37, P <.001). Support was also a significant determinant of self-care management (β = 6.3, βs = 0.25, P =.02). When support and confidence were entered simultaneously, both variables were significant determinants of self-care management. Together, they explained 17.8% of the variance in self-care management. The direct relationship of support to self-care management was less significant than it had been in the previous equation (β = 2.8, βs = 0.11, P =.29), providing evidence of a mediator effect.28 On the basis of this analysis, we believe that support improves self-care management by improving patients' confidence in their abilities to perform heart failure self-care.
The results presented here were derived from secondary analyses of existing data sets and are thus limited. Further research is needed to validate and understand these findings. Most results supported the theory as proposed, but others, such as higher self-care maintenance in patients with lower knowledge scores, require further study. Furthermore, many of the results presented suggest a trend but were not statistically significant. Further testing is essential.
An important limitation of this situation-specific theory is that it is a biomedically derived approach to health that focuses on a specific illness. As such, important cultural, gender, and psychosocial influences on self-care are ignored.1 It is essential to recognize that the decision making discussed in relation to the self-care of heart failure is greatly influenced by the broader context in which patients live.
Implications for Practice
Self-care is believed to be an essential ingredient in successful heart failure management. For nurses, self-care is a particularly important construct because it captures the essence of our philosophy and a key dimension of our practice. The analyses presented in this article confirm that it is important to encourage self-care in our patients, as those who engage in self-care seem to have better outcomes. These analyses also suggest that we may be able to identify the patients most at risk for poor self-care. If this is true, in the future, we may eventually be able to identify those patients most in need of an intervention to improve self-care.
Another important implication from this discussion is the need to use consistent terms so that we are able to communicate clearly about the subtleties of self-care. If we all use different terms, we will have difficulty communicating our points to each other. Finally, if future research continues to support the importance of confidence in the self-care equation, interventions aimed at improving self-care confidence need to be developed and tested.
In conclusion, in this article, a situation-specific theory of heart failure self-care is presented. Four propositions were tested, which provided preliminary evidence that the theory is useful for explanation and prediction. With further testing, the theory may prove useful in situations where we seek to control outcomes. Im and Meleis3 note that there are probably several reasons for the seeming disconnect among theory, research, and practice, but one likely reason is the tension between theoretical vision and clinical wisdom. Situation-specific theories such as the self-care of heart failure theory described here may be one way of linking theory, research, and clinical practice. The theory described here directly reflects the experiences of clinicians in their daily practice. As such, it is hoped that this theory might provide guidance for both clinical intervention and research.