داستان آفات، تصورات غلط و اتفاقات ناگوار: مدیریت موثر نارسایی قلبی
|کد مقاله||سال انتشار||تعداد صفحات مقاله انگلیسی||ترجمه فارسی|
|35272||2004||12 صفحه PDF||سفارش دهید|
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Publisher : Elsevier - Science Direct (الزویر - ساینس دایرکت)
Journal : Social Science & Medicine, Volume 58, Issue 3, February 2004, Pages 631–643
Congestive heart failure (CHF) is a common chronic disease with effective therapy, yet interventions to improve outcomes have met with limited success. Though problems in self-management are suspected causes for deterioration, few efforts have been made to understand how self-management could be improved to enhance the lives of affected patients. We conducted semi-structured interviews of 19 patients with CHF treated at an urban United States hospital to elucidate their knowledge and beliefs about CHF and to understand what underlies their self-care routines. A comparison of the themes generated from these interviews with the common-sense model for self-management of illness threats, clarifies how patients’ perceptions and understanding of CHF affected their behaviors. Patients had an acute model of CHF. They did not connect chronic symptoms with a chronic disease, CHF, and did not recognize that these symptoms worsened over time from their baseline of moderate, chronic distress, to a severe state that required urgent care. As a consequence, they often did not manage symptoms on a routine basis and did not, therefore, prevent or minimize exacerbations. When they worsened, many patients reported barriers to reaching their physicians and most reported seeking care primarily in an emergency room. These in depth responses elucidate how the interplay between acute and chronic models of a chronic illness effect self-management behaviors. These factors play a previously not understood role in patient's efforts to understand and manage the ever-present but symptomatically variable chronic illness that is CHF. These new concepts illustrate the tools that may be needed to effectively manage this serious and disabling illness, and suggest possible ways to enhance the self-management process and ultimately improve patients’ lives.
Nearly 5 million Americans suffer from congestive heart failure (CHF) (American Heart Association, 2002). CHF is expected to double in prevalence by the year 2030 (US Department of Health, 1991), and the number of CHF-related physician visits and hospitalizations are also expected to rise in the coming decades (Stewart, MacIntyre, Capewell, & McMurray, 2002). It is the most common reason for hospitalization and emergency department, or emergency room (ER) visits by persons over 65 years of age in the US. Hospital discharges for CHF have more than doubled from 1979 to 1999 (American Heart Association, 2002). Despite the myriad studies demonstrating the effectiveness of medications in improving survival and quality of life (Packer et al., 2001; CONSENSUS, 1987; SOLVD, 1991; Hunt et al., 2002), the prognosis for individuals with CHF is grim; 75% of the men and 62% of the women die within 5 years of diagnosis (Ho, Anderson, Kannel, Grossman, & Levy, 1993). In a more recent European study, median survival of patients hospitalized for CHF increased between 1986 and 1995 (from 1.2 to 1.6 years), but CHF patients’ prognosis was still poor (MacIntyre et al., 2000). In fact, in contrast to mortality declines for most heart and blood vessel diseases, CHF deaths in the USA increased 145% from 1979 to 1999 (American Heart Association, 2002). Recent clinical guidelines highlight the need for patients to have a solid understanding of CHF. Understanding is not confined to abstract, “book” knowledge (ACC/AHA Task Force, 1995). To avoid and/or minimize life-threatening exacerbations and maintain quality of life, persons with heart failure must receive and make regular and appropriate use of recommended treatments and adopt life style changes. US Federal health guidelines suggest that clinicians counsel CHF patients to adhere to drug regimens and a very low sodium diet to avoid fluid retention (Hunt et al., 2002). They should also teach patients to regularly monitor early markers of fluid retention that herald a deterioration, including increases in weight, swelling and shortness of breath, and appropriately respond to these markers. For example, patients should weigh themselves daily, contact their providers if their weight changes by more than 3–5 pounds, and adjust their diuretic dose based on weight changes (Konstam, Dracup, & Baker, 1994). It is clear that many persons with CHF do not initiate and maintain the self-management strategies needed to avoid rapid deterioration of their condition and the need for emergency assistance. Without self-care, their condition typically deteriorates rapidly and patients then seek help at an ER—not the optimal place to treat patients with complex, chronic diseases—or they may require hospitalization for more intensive treatment. Researchers have begun to uncover the obstacles persons with CHF must overcome so they can manage this illness. While practice guidelines have synthesized best evidence and clinical judgment into specific recommendations for clinicians, many patients receive suboptimal care. Important physician factors that may contribute to CHF exacerbations are under-utilization of established therapy such as ACE inhibitors that can reduce morbidity and mortality, and suboptimal education, including low rates of general and dietary counseling (Smith et al., 1998; CONSENSUS, 1987; SOLVD, 1991; IPRO, 1996). Medication and dietary nonadherence (with sodium restriction), inadequate discharge planning and follow-up, lack of social support and not seeking medical attention promptly when symptoms recur also increase the risk of CHF exacerbations (Ni et al., 1999; Ghali, Kadakia, Cooper, & Ferlinz, 1988; Chin & Goldman, 1997; Vinson, Rich, Sperry, Atul, & McNamara, 1990, Tsuyuki et al., 2001; Michalsen, Konig, & Thimme, 1998). Although these data suggest great potential to improve the care of CHF patients, a compelling need to do so, and specific areas in which efforts can be made to improve CHF-related function, programs designed to achieve these goals have met with limited success. Many of the programs which have shown improvements in patient outcomes have required substantial investments in multi-disciplinary staff time which may prove to be unsustainable and infeasible in practices with limited resources (Naylor, Brooten, & Jones, 1994; Rich, Beckham, & Wittenberg, 1995; Foranow et al., 1997; Hunt et al., 2002). Newer, less cumbersome programs involving nurse or pharmacist management have shown decreases in hospitalizations and improved quality of life (Blue et al., 2001; Krumholz et al., 2002; Varma, McElnay, Hughes, Passmore, & Varma, 1999; West et al., 1997), but with the exception of one study (Stewart & Horowitz, 2002), there has been no clear improvement in survival. The modest success of interventions points to the need for a fundamental reexamination of how CHF patients understand and manage their physical conditions. Interventions conducted to date do not benefit from sufficient data on which potentially modifiable factors are responsible for suboptimal treatment, inadequate self-management and adverse CHF outcomes. Specifically, it is important to determine whether patients understanding and perception of CHF capture the features of the disease that are critical for their participation in their own care. For example, do people with CHF know why it is important to take certain medications, check their weights and avoid salt? Do they attend to and perceive the benefits of these protective procedures? Have patients been taught how to monitor the effectiveness of these strategies? Do they know what to do if the strategies do not appear to be working? Can we identify potentially correctable lacunae in their understanding and perceptions that are responsible for less than optimal self-management? We combined two approaches to answer these questions. Initially, we conducted and analyzed a small set of patient interviews to elucidate patients’ knowledge and beliefs about CHF, the strategies they use for self-care, the cues guiding these strategies and barriers they face in trying to maintain their health. We then examined the match between the themes we uncovered, and the factors identified as critical for self-management by the common-sense model of illness (Leventhal, Meyer, & Nerenz, 1980; Leventhal, Diefenbach, & Leventhal, 1992; Brownlee, Leventhal, & Leventhal, 2000). According to this self-regulation model of the mental processes involved in the management of illness threats, self-management reflects how patients’ conceptualize their perceptual experience with a disease. We began with a hypothesis that three aspects of this model, depth, breadth and coherence, will prove critical for self-management of CHF as a chronic rather than an acute condition. First, chronic management should require that the chronic, low level symptoms and signs which make up the background of the illness experience, be connected to their label, CHF. The bi- directional link between abstract concepts (CHF) and perceptions (symptoms and signs) ought to give depth or meaning to the representation of CHF. In other words, chronic symptoms need to be seen as indicators of CHF if they are to elicit even the simplest, behavioral procedures ( Meyer, Leventhal, & Gutmann, 1985; Leventhal & Diefenbach, 1991). Our second hypothesis is that these labeled symptoms need to have breadth, including an understanding of their timeline (symptoms worsen when untreated), consequences (untreated symptoms can be life-threatening), specific causes (buildup of fluids), and that worsening symptoms can be controlled with appropriate action. Our third hypothesis is that the chronic model or representation of CHF (label, symptoms, time-line, etc.) needs to be coherent, or tightly linked to a specific set of procedures (such as taking medications) to manage both chronic symptoms and symptom exacerbations. Plans should incorporate concrete cues that elicit action at specific times and places, and appropriate criteria for evaluating action efficacy ( Leventhal, 1970). The examination of the qualitative data presented here is designed to provide a direct view of these processes which have been inferred from but not made visible in prior, quantitative analyses (see Brownlee et al., 2000). The present study used interviews to focus on patient factors that may serve as barriers to effective self-management in response to the picture of fluctuating symptoms that CHF offers to a sick individual. Through comparing these responses to what is currently the most conceptually differentiated model of the cognitive processes involved in self-regulation, we clarified the nature of these barriers, and opened and expanded our view of the dynamics of the processes underlying self-regulation in response to chronic illness. We believe uncovering gaps in knowledge and skills for the self-management of CHF as a chronic condition, will provide an entry point for the development of programs designed to decrease the frequency and severity of episodes of decompensation and maximize quality of life.
نتیجه گیری انگلیسی
The patients ranged in age from 52 to 89 years; nine participants were women, eight were African American, five Latino, and six Caucasian. Using the New York Heart Association Classification to estimate severity of illness, no patients had class I (asymptomatic) CHF; five patients had class II (mild to moderate) CHF; seven had class III (moderate to severe), and seven had class IV (the most severe) CHF (Critical Committee, 1964). Five of the patients had private or HMO physicians, 12 had clinic physicians, two did not have a regular physician and 10 of the 19 regularly saw cardiologists. Eleven patients had Medicare and/or Medicaid insurance, six had private insurance and two were uninsured. We did not collect other sociodemographic information. The mean duration of the interviews was 50 minutes. Major themes While we identified 60 themes, three were dominant among this sample of patients: (1) Patients had inadequate information about causes, symptoms, management and consequences of CHF. (2) Patients did not appear to have the tools to prevent, recognize, or act to address the exacerbation of their conditions before their conditions deteriorated quite significantly. (3) When symptoms worsened to the point where patients were aware of danger, they tended to have difficulty navigating systems and overcoming barriers to receiving care outside of an emergency room. Theme 1: Inadequate knowledge of the causes, symptoms and consequences of CHF—Gaps in depth and breadth. In our sample, patients did not connect CHF or a weak heart to their symptoms, nor did they have a clear understanding of acute and chronic CHF-related symptoms. As related to the common sense model, their representations lacked depth. All but one patient suffered from classical symptoms of CHF including fatigue, dyspnea and edema ( Grady et al., 1995), and the majority of participants stated they had fluid buildup. While they often used the presence of these symptoms to define their health, very few patients labeled their illness as heart failure (lack of depth). Instead, many could give no adequate explanation for what caused their condition or the symptoms for which they had recently been treated (lack of breadth). Others linked their symptoms to external influences, such as stress. Many patients isolated symptoms and attributed them to other illnesses such as dyspnea caused by asthma, unaware they were also related to a weak heart. Interestingly, patients demonstrated a depth of understanding of other conditions. They readily connected symptoms to other illnesses, such as relating chest pain to angina and heart disease. This group of patients also did not demonstrate a clear understanding of the timeline, causes and consequences of CHF—their representations lacked breadth. Few described CHF as incurable, or very serious. Most patients did not describe CHF as condition that is present in the intervals between acute episodes. Patient 9, a 63 year-old man said: “They gave me medicine to keep my heart clean, so it (heart failure) shouldn’t happen no more. …as far as what the long term prognosis should be, I have no idea. … for some reason I seem to feel that this is lesser of all the heart conditions and yet, you know, it is a heart condition, plain and simple and so, looking at it like that, I uh I’m pretty much still in the dark as to just what CHF is. I have no idea, really, you know.” Even when symptoms were severe, patients we interviewed often did not link these symptoms to the label CHF, or to specific plans for action to treat CHF. Patient 11, a 66-year-old woman said: “When you hear about having heart problems, …you’re supposed to feel maybe a pain in your left arm, maybe a pain in your chest, or pressure. I couldn’t describe what I felt as pressure but I guess it must have been that, uh because I had to struggle in order to talk… I guess it would have been more clear to me if I had chest pain and then I would have said okay, I’ll call and say I’m having chest pain but it didn’t just seem to me like anything came together where I could call.” Theme 2: Failure to link symptoms with procedures—Gaps in coherence. Without an understanding of the source and implication of their symptoms, it is not surprising that patients in this sample: (a) did not routinely act to prevent exacerbation, and (b) did not recognize and address escalating CHF symptoms. Theme 2a: Inability to prevent exacerbation. Patients were not armed with a coherent model of CHF as a chronic disease caused by a weak heart. They did not recount that they could minimize fluid build-up and its symptoms through specific self-management procedures (including salt restriction and taking medications), and detect fluid build up at early stages by regularly assessing their weight and symptoms. Though nearly all patients said they needed to restrict salt in their diet, few stated this was to prevent their CHF symptoms, not just to decrease their blood pressure. For some, this dietary restriction seemed less compelling, as they were controlling an asymptomatic condition (hypertension). Patients whose representations incorporated some of the features of a chronic model stated they limited their salt intake if they were experiencing increasing edema. However, some misperceived the procedures they had adopted. They did not know their chosen actions were negatively related to their goals. Patient 2, a 63-year-old man inadvertently used a very high salt substitute. He explained, “I never do [use salt], since… my pressure went up on me years ago … I don’t use salt like when I cook… I use like a bouillon cube…” Most persons we interviewed believed their medications were effective and described taking their medicines regularly. Most, however, also thought their medications were to treat other conditions, and in the case of diuretics, thought they only needed to use them when their symptoms (such as leg swelling) were severe (acute model). Theme 2b: Inability to recognize and address worsening symptoms. Because these patients did not connect their symptoms to an illness with a specific name, associated symptoms and course of action, they did not generally monitor or perceive escalating symptoms of CHF, and did not accurately interpret their meaning (lack of breadth). A deterioration in their condition (short of extreme illness) did not usually trigger a meaningful response. They did not link perceptible cues to action. They were neither encouraged, nor prepared to act to control these changes, or to monitor the efficacy of any procedure that they might perform. Clinical signs of increasing volume or fluid retention, such as increasing weight, dyspnea or edema, went unappreciated, or were not interpreted as markers of a worsening but treatable condition. Instead, symptoms were seen as vague sensations of multiple possible, but unknown cause, and while bothersome, of unclear or low importance. The consequence was missed opportunities to short circuit the decompensation associated with potentially life-threatening episodes. Very few patients weighed themselves regularly. One of these, patient 10, did not know this helped assess his fluid balance and he did not know what to do about weight gain—during the prior week he stated he gained 9 pounds, but took no action. The other, patient 13, received almost daily phone calls from her grandson, a cardiologist, directing her to check her weight, and telling her how much diuretic to take for weight gain. She was the only person who took supplemental diuretics to treat minor fluctuations, such as weight gain or increasing swelling, and to prevent a more dramatic deterioration. She appeared to follow her grandson's instructions, however, without understanding their rationale. When participants did detect symptoms, they frequently stated the symptoms were not that severe, or that they were not as serious as symptoms of other medical conditions. These patients did not, therefore, perceive a need to seek help. This led to a balancing act of feeling sick but waiting it out to see if their symptoms would resolve on their own. Most patients had difficulty defining an intermediate zone between what they labeled their poor baseline status and a state of such severe symptomatic illness that they needed to visit an emergency room, or be admitted to a hospital. They reported that their symptoms came on suddenly without warning and that their onset was often during the night. Detailed questioning revealed, however, that many patients had symptoms in this intermediate zone (such as increased shortness of breath) that indicated an impending decompensation, but did not perceive their significance. Patient 11, under the care of a private cardiologist, was asked: