This issue of the Journal of Cardiovascular Nursing focuses on the self-care required of adults with heart failure (HF). Self-care refers to the behaviors that individuals engage in and the decisions they make about activities that promote health and limit illness. In HF, self-care is the cornerstone of therapy. Although much of the general HF literature focuses on the care that persons with HF receive from healthcare providers, in reality, most HF care occurs at home and is done by patients and their families. That is, most of the care that patients receive for HF is self-care.
As shown in Figure 1, research into HF self-care has grown exponentially since Medline first began indexing this literature. As of January 2008, there were 204 articles on HF self-care indexed in Medline. Clearly, interest in this topic is growing. Also, the science related to this topic has burgeoned.
The purpose of this issue of the Journal of Cardiovascular Nursing is to review what is known about the science of HF self-care. The issue begins with a situation-specific theory of HF self-care. In this article, Riegel and Dickson1 define 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). Confidence in self-care is proposed as moderating and/or mediating the effect of self-care on various outcomes. This article begins with a discussion of related terms (eg, treatment adherence and self-monitoring). Then, the authors test 4 propositions derived from the self-care of HF conceptual model of Riegel and colleagues2 and test these propositions using data obtained in previous research, lending early support to their situation-specific theory of HF self-care.
The self-care behaviors that clinicians routinely counsel HF patients to engage in are weighing themselves daily, monitoring for swelling, taking their prescribed medications, following a low-sodium diet, staying physically active, avoiding illness with routine immunizations, and consulting regularly with providers. Many of us are in a quandary about whether to encourage HF patients to attain and maintain a normal body weight. Of these behaviors, the one that seems to challenge patients the most is following a low-sodium diet. In this issue, Lennie3 reviews the state of the science in sodium restriction recommendations, nutrition recommendations, body weight recommendations, and strategies to improve nutrition self-care. He concludes that the current state of knowledge is insufficient for clinicians to provide evidence-based interventions to improve nutrition self-care. Hence, at this point, we must continue to base our recommendations on physiology, tradition, and common sense. Research is greatly needed in this area.
Experts in self-care recognize that knowledge is necessary but not sufficient in attaining the goal of HF self-care. A wide variety of factors have been determined to impair patients' abilities to engage in self-care. Moser and Watkins4 propose a life course model of patient characteristics that influence HF self-care, including aging, psychosocial issues, health literacy, current symptom status, and previous experiences. Wingate5 comments on the importance of this model for clinical practice and research. Macabasco-O'Connell and colleagues6 calls our attention to the challenges that indigent HF patients face in performing self-care.
Another issue that impairs self-care is poor sleep. Redeker7 discusses the high prevalence of sleep disturbance and sleep disorders, including insomnia, periodic limb movements during sleep, and sleep disordered breathing, in persons with HF. Recent studies underscore the importance of disturbances in sleep, with decrements in functioning that may negatively influence the capacity to perform self-care. Another important contributor to self-care is cognition. Pressler8 reviews the recent literature on this topic, focusing on the studies that assessed changes in cognitive functioning over time. She confirms that 25% to 50% of HF patients experience cognitive impairments, with structural and functional brain changes, including losses in gray matter in specific areas, areas of silent stroke, and decreased cerebral perfusion. After reading these articles, readers will have a greater appreciation of the challenges that our patients face when trying to follow our directions.
Interventions that effectively enhance self-care are summarized by Evangelista and Shinnick,9 who demonstrate that strategies that motivate, empower, and encourage patients to make informed decisions and assume responsibility for self-care are most effective. For HF patients struggling to perform adequate self-care-now recognized as many, if not most, of our patients-family support is needed if patients are to be successful. Patients without family and those who live alone and are socially isolated are highly vulnerable. Dunbar and colleagues10 note that few investigators have tested family-focused interventions to promote HF self-care. Findings from the small body of literature that exists suggest that family functioning, family support, problem solving, communication, self-efficacy, and caregiver burden are important areas to target for future research.
Little is known about outcomes or process of self-care in the "sickest of the sick"-those patients with advanced HF who are approaching the end of life. Zambroski11 summarizes what is known about self-care in the advanced HF population and what is meant by self-care management in patients who are symptomatic with any exertion. She challenges us to develop the simplest, least burdensome self-care interventions that target the most meaningful outcomes for HF patients, their families, and the healthcare system.
Persons with HF are frequently admitted to the hospital, so hospitalization seems an ideal time to educate patients, engage families, and emphasize the importance of HF self-care. However, interventions that might help patients to engage in self-care are not systematically used in healthcare systems or by providers. Albert12 discusses clinical guidelines and the evidence regarding HF self-care from the perspective of healthcare system personnel and providers, noting that no performance measures address patient self-care in the hospital or ambulatory care setting. Thus, we remain unsure if the intervention methods used in hospitals and ambulatory care settings are effective or if the breadth and depth of education provided are sufficient.
The real question in the science of HF self-care, though, is "so what?" Can self-care influence outcomes? Surprisingly, this is an unsettled question. Numerous studies have demonstrated that admission to the hospital for HF often can be attributed to poor self-care.13-15 However, we remain uncertain if interventions that enhance self-care are sufficient to decrease hospitalization and improve quality of life. In the final article in this issue, Grady16 critiques the research testing self-care interventions designed to improve quality of life. Focusing on the randomized, controlled trials, the gold standard of evidence, she concludes that the evidence is equivocal at this point. Multisite, large trials are needed in which enhancing self-care is the primary intervention, terms are carefully defined, and conceptual frameworks are used to guide the research.
In summary, the science of HF self-care is young. We have defined the concept, demonstrated its importance, and identified a multitude of factors that are making self-care an elusive goal. At this point, we need desperately to move into intervention trials that are explicitly designed to influence self-care. Perhaps, in another decade, we will be able to state that self-care is not only conceptually appealing but also undeniably important as an approach to improving HF outcomes. But we are not there yet.
Barbara Riegel, DNSc, RN, FAAN, FAHA
Associate Professor, School of Nursing
University of Pennsylvania, Pennsylvania.
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