Family Practice Vol. 18, No. 2, 117-122
© Oxford University Press 2001
Coping strategies in the self-management of chronic heart failure
Department of General Practice and Primary Health Care, University of Auckland, PO Box 92 019, Auckland, New Zealand.
Buetow S, Goodyear-Smith F and Coster G. Coping strategies in the self-management of chronic heart failure. Family Practice 2001; 18: 117–122.
Received 22 March 2000; Revised 8 August 2000; Accepted 30 October 2000.
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Abstract |
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Background. A patient's psychological adaptation to heart failure can influence its impact on his or her life. However, attempts to understand how patients cope mentally with severe emotional strain have led to inconsistent use of a plethora of concepts, making communication and clinical care difficult.
Objectives. The aim of the present study was to develop a framework for conceptualizing how patients with chronic heart failure cope mentally with their illness, and then use the framework to suggest how GPs can facilitate patient self-care.
Methods. We systematically reduced and reassembled the narrative texts of personal, semi-structured interviews until their interpretation was complete. The interviews were conducted during late 1999 with 62 heart failure patients under GP care in 30 practices across central Auckland, New Zealand.
Results. Our framework describes four coping strategies: avoidance, disavowal, denial and acceptance. Disavowal provides a distinct coping strategy through which patients, who basically understand the threat to their life situations, seek hope through positively reconstructing this threat. Use of this strategy was highly salient regardless of patients' age, the length of time since their recorded diagnosis or the degree of self-reported limitation of recent physical function due to heart failure. Only over age 70 were avoidance and acceptance also highly salient among patients whose heart failure was diagnosed at least 3 years previously and had mildly limited their recent physical function.
Conclusion. Many different heart failure patients use disavowal to palliate the emotional strain and find hope. Disavowal is not a problem to deal with but a process GPs can facilitate by implementing a range of suggested strategies through methods such as story telling.
Keywords. Coping, denial, disavowal, heart failure.
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Introduction |
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A light dances cheerfully before me,I follow it this way and that;I follow it gladly, knowingThat it lures the wanderer.Ah, a man as wretched as IGladly yields to the beguiling gleamThat reveals to him, beyond ice, night and terrorA bright warm house,And a beloved soul withinEven mere delusion is a boon to me.Müller W. ‘Illusion’ in Winter Journey
According to New Zealand's Heart Foundation guideline for the management of heart failure,1 patients and their families or caregivers need general counselling after a diagnosis of heart failure is established. This guideline notes that "the impact of heart failure on a patient's life may be related as much to psychological adaptation to the disease as to impairment in physical functioning" (p. 7). Attempts to understand how patients adapt to, and cope mentally with, disease have led to the inconsistent use of a plethora of concepts (such as avoidance, negation, denial and disavowal), making communication and clinical care difficult.
We seek to help provide the conceptual clarity that GPs require to understand and manage differences between heart failure patients in adaptation and needs for emotional support. Specifically, we aim first to suggest a framework for viewing patient strategies to cope mentally with living with heart failure, and then to draw on the framework to suggest how GPs can facilitate patient coping.
Coping, according to Lazarus and Folkman, involves "constantly changing cognitive and behavioural efforts to manage specific external and/or internal demands that are appraised as taxing or exceeding the resources of the person" (p. 141).2 This definition highlights the relationship of the individual to his or her body and socially defined situation. Management of this relationship requires problem-solving and the need to regulate emotional consequences of the diagnosis and disease. Our paper focuses on approaches that patients use to meet the latter need for emotion-focused coping, i.e. their need to manage mentally the threat that chronic heart failure poses them.
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Methods |
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We produced our framework by ‘editing’ the narrative texts of 62 semi-structured personal interviews by SB with adults receiving general practice care for heart failure in central Auckland, New Zealand. The interviews were conducted in the second half of 1999, typically in patients' homes, as part of a study on quality of care in general practice.
Sampling
The interviewed patients were selected in three stages. First, a sample of 64 practices affiliated to a large primary care organization was selected from a complete list of 82 practices. The sample was selected through proportional random sampling in three cross-classified strata: solo or group practice and, with reference to the census area unit of the practice, the percentage of the population that is Maori (in quartiles) and the NZDep91 deprivation index score (in tertiles). Of the 64 practices invited to participate in our study, 30 (47%) agreed.
Secondly, we randomly selected and recruited one full-time GP in each of the 30 participating practices. Thirdly, (s)he selected randomly up to eight heart failure patients (mean = 4.6, SD = 2.7) from repeat prescribing records or a list of ‘eligible patients’ from all past or prospective visits over a 6-week period. Eligible patients were aged at least 45, had been treated for recorded heart failure for at least 2 months and were registered with the practice. Patients with known diastolic failure or dementia were ineligible for recruitment. Each GP sought to recruit patients through a standardized letter, information sheet and consent form, usually in the patient's own language.
Sixty-two of 137 patients agreed to take part. However, because this paper reports qualitative research, what matters is not the number and representativeness of patients but the diversity, relative independence and unassailability of their experiences and insights.3 Our sampling strategy identified patients with characteristics —including age, and time elapsed since the diagnosis (see below)—likely to maximize variability in response, albeit less efficiently than with theoretical sampling.
Data collection
The interviews sought to respond flexibly to patient's agenda while meeting our need for narrative understanding in areas such as coping behaviour. To these ends, SB used an interview guide systematically to elicit semi-structured conversations on issues relating to the quality of care and self-care, including coping. Patients were asked directly how they had coped with, or adapted to, their heart condition. We restricted our recording of patient narratives to handwritten fieldnotes out of concern that some elderly patients in particular would feel social pressure to agree to a process of audiotaping that might distress them.
Type of analysis
The editing approach used to analyse the narratives contained in these notes seeks explicitly and systematically to reduce and reassemble the data until their interpretation is complete.4 This inductive but explicitly cut-and-paste approach let us identify themes from patients' ‘stories’. We elaborated and modified the themes through continued comparison with the original descriptions and with existing psychoanalytical theory on defensive processes underpinning ‘emotion-focused’ coping behaviour. In particular, we played our findings against Salander and Windahl's5 conceptualization of everyday experiences in cancer care, which distinguishes between avoidance, disavowal and denial. Editing of our data continued until we had produced our framework for understanding how patients cope mentally with living with heart failure.
We then explored relationships between coping strategies and patient characteristics such as age, sex, time since the recorded heart failure diagnosis, and self-reported limitation of physical function due to heart failure over the previous month. Measurement of the last variable was based on the sum of scores on eight items defining a physical dimension of the Minnesota Living with Heart Failure Questionnaire.6 The salience of observed relationships reflects our interpretation of their clarity, importance and plausibility in describing patients' lived experiences.
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Results |
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Our framework suggests that, collectively, patients with chronic heart failure may use four approaches for emotion-focused coping: avoidance, disavowal, denial and acceptance. These approaches are not necessarily mutually exclusive, though one typically dominates. We discuss each in turn before considering the implications for GP care.
Avoidance
Some patients deliberately avoid information, especially if it may be unfavourable. Such patients are reluctant to face reality,7 and use, what Croyle and Ditto8 called, "minimisation to reduce emotional arousal". In our sample, such patients did not want, or accept the need, to know about their heart failure condition. This preference may help to explain why many patients did not understand the nature or seriousness of heart failure. For these patients, avoidance might have preceded their heart failure. However, avoidance also signified a response to the experience of heart failure because, at ages over 70 (regardless of the sex of the patient), avoidance was highly salient where the diagnosis of heart failure had been recorded at least 3 years previously (Table 1
).
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Table 2
shows that avoidance was highly salient among patients attributing to heart failure their mild limitation of recent physical function. For example, two 79-year-old patients, whose mild heart failure had been diagnosed in the early 1990s, stated respectively: "I don't know why I take Digoxin but I don't really care" and "Personally I couldn't care less [about the lack of information provided]." However, avoidance was also associated with moderate–severe limitation of recent physical function, as exemplified by an 84-year-old patient who had been diagnosed with heart failure 6 years previously. When asked what information he had received about his heart failure, he replied, "None. I don't ask questions. I think they know what they're doing."
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Nor is it only health professionals whom patients may seek to absolve of responsibility for their heart failure management. These patients may also cultivate dependency on family or friends. For example, through apathy rather than physical incapacity, one elderly woman had, with no regret, become highly dependent on her husband—and proudly exclaimed, "You don't keep a dog and bark yourself!"
The lack of understanding and dependency that avoidance produces may reduce anxiety and aid recovery during acute heart failure. However, avoidance can leave patients maladaptive in the long term9,10 by preventing active participation in decision making, inhibiting adherence to treatments11 and robbing patients, with the capacity for moral agency, of essential elements of their own humanity.
Disavowal
Disavowal (‘healthy denial’12) involves "self-deception in the face of accurate perception".5 Patients who engage in this mainly pre-conscious process basically understand the threat to their life situation. They register and acknowledge reality, but, to palliate the emotional strain it produces and to affirm their health, they seek at the same time to dissociate that awareness from its personal impact. This is done by positively reconstructing its personal meaning or significance.
In our sample, disavowal was a distinct coping strategy, little influenced by patients' age, duration and severity of heart failure (Tables 1 and 2
), or sex. However, under age 65, disavowal was most salient where heart failure had been diagnosed less than 3 years previously. Sources of disavowal included physical, psychological, social and spiritual health, as well as medical uncertainty.
Some patients affirmed their physical health without repudiating the reality of their heart failure. This occurred most conspicuously among recently diagnosed patients in their 50s, whose heart failure was mild or well controlled through medication and lifestyle. For example, a 53-year-old man, diagnosed with heart failure in early 1997, stated:
"my second by-pass and medication for heart failure have given me a new lease of life ... I feel better now than I have for fifteen years. Physically there's nothing to deal with [and] mentally, it's amazing how things fade so quickly. I know how awful heart failure was [our italics] but it's just a dim memory now."
His absence of symptoms made credible a suspension of knowledge of the gravity of the condition, and he added, "How do I know this is serious? Just the word of the medical profession." However, he apparently had moved to disavowal from a state of avoidance because, despite his current lack of symptoms, "They had threatened me with a heart transplant and the psychologist on the transplant team accused me of not want-ing to know." Another patient with mild heart failure reported that his doctor "said it has got a bit worse but I don't know whether it has or not because I don't feel any different." Meanwhile, older patients frequently used their age to help rationalize non-specific symptoms. For example, "Now I feel perfectly well. I do the normal things ... I'm back on the exercycle and I do the gardening. I get tired but I'm 71."
Patients finding hope in their bodies might therefore conclude, as did a 52-year-old man diagnosed recently with heart failure, "This is not as bad as everyone's making it out to be. It's not a major disaster." He added, "... [and] my weight, more than my heart problem, was the prime motivator (sic) for losing weight." Cognitive manoeuvres of this type disavow the diagnostic implication of heart failure and minimize its personal significance. However, they illustrate a normal process of positive illusion formation under the emotional strain of major illness.14
Other loci of disavowal include psychological, social and spiritual health. Psychological health taps cognitive functioning and feeling states. A diverse range of patients claimed, for example, to have a fighting spirit and resilience. Their comments, including "I’m a Taurean and don't like being beaten. If you think you're going to beat me, you've got another think coming," suggest confidence in overcoming heart failure. However, such idiomatic statements may say less about coping style than ‘moral pressures of the social world’ to self-report positive thinking and use it as a conversational aid in talking about illness.15
That disavowal can result from social health—the extent and depth of social functioning and social support—was illustrated by comments like, "My family cheer me up. They say ‘Come on Mum, you've got plenty of life in you yet’." The children of this woman sustained her hope and gave her a reason for living. In contrast, a Pacific man, hospitalized with severe heart failure, found social support in his marriage and hope for an end to his impotence. The 53-year-old man we referred to above said, "If single, I might not have cared less [about the diagnosis]," and, indeed, we interviewed formerly married men who described their hope not in life but in the promise of death to release the pain of their life.
This same blurring of disavowal and acceptance characterized patients whose disavowal derives from spiritual health, i.e. life-affirming wellness based on a personal transcendence beyond reality, as reflected most commonly in religious faith. Such faith best explains the high saliency of disavowal in the very oldest patients, diagnosed at least 3 years previously (Table 1). They spoke of how faith obviated their need to worry or fear. For example, one man said, "I'm waiting for a new body, which I'm getting at the resurrection. I'm 84 years a Christian." An 85-year-old Catholic Brother explained his positive attitude by adding, "You've got to look on the bright side. Otherwise it's harder on yourself." Religious faith permitted these older patients to reconstruct their image of death positively not as an end but as the beginning of a new life journey. However, whether spiritual beliefs involve ‘illusion formation’, and therefore disavowal, is debatable.
Lastly, patients may use medical uncertainty to support the wish for an erroneous diagnosis. Specific disorders of heart structure or function cannot indicate the clinical syndrome of heart failure, and subjective recognition of this syndrome is an ‘inexact science’.13 Even when symptoms and signs are consistent with an abnormality in heart function, providers cannot know whether the two are causally related because agreement is lacking on an objective definition of heart failure.
Resulting diagnostic uncertainty may be shared with patients, explicitly or implicitly. For example, on being prescribed Renitec (Enalapril), a retired health professional, with heart failure recorded in his general practice notes, reported that he was told by his cardiologist: "Renitec is for Congestive Heart Failure but you haven't got heart failure." This patient knew that Renitec can be prescribed for high blood pressure but stated, "my blood pressure has always been 120 over 80." Despite suspecting heart failure, he clung to the words of his cardiologist by seeking explanations such as an ‘irregular heart beat and enlarged heart’.
Denial
The vernacular meaning of ‘denial’ (refusal to believe or accept [something])16 differs from its scientific meaning. The latter describes a mechanism of defence against external reality, which operates unconsciously to prevent the patient from knowing the truth. Lacking the mental elaborations so characteristic of disavowal,5 denial is a ‘selective perceptual blindness to unpleasant facts’,17 which leaves the patient indicating no existence of a serious problem. Connected a priori to psychopathology, denial not only distorts reality, it repudiates it to leave the threat of illness outside the patient. Freud18 distinguished this process from disavowal (see above), but subsequent writers,9–11 including Anna Freud,19 have not always been careful to embody the distinction. Denial is uncommon and we detected no-one who clearly exhibited it.
Acceptance
Here, patients consciously acknowledged the validity of their received diagnosis of heart failure without attempting to reconstruct positively its meaning or personal significance. Mainly aged in their 70s, these patients had resigned themselves to the reality and significance of the threat that heart failure poses them. Their acceptance of heart failure was most salient where it had been diagnosed at least 3 years previously (Table 1) and mildy limited their recent physical function.
Facilitating these patients' state of resignation was a fatalistic attitude of coping through "acceptance of man's mortality. What will be will be." For example, one man said, "I know I'm going to freak out one day. I'm 81 and have no regrets about life." Acceptance sometimes also reflected a need to show personal strength. For example, a 52-year-old man, diagnosed with heart failure in early 1995, stated dispassionately, "I'm a factual person. I don't get very emotional and have no fear of dying."
In contrast, other ‘accepting’ patients admitted to dreading the perceived inevitability of their own premature death. However, for them, acceptance was the only objective, non-destructive approach they could take to cope with their helplessness to control their illness course. They therefore invoked mechanisms such as humour, support from family and friends, and distracting activities such as music and gardening.
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Discussion |
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TopAbstractIntroductionMethodsResultsDiscussionConclusionReferences |
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We have considered how patients cope mentally with the emotional strain of living with heart failure. Those who at least basically understood the seriousness of their condition appeared to use one or more of three coping strategies: avoidance, disavowal and acceptance. According to Lazarus and Folkman,2 these strategies cannot be inherently valued, although they may produce different outcomes.
Avoidance and acceptance characterized mainly older patients, whereas disavowal typified patients of all ages and was more salient than the other strategies among patients attributing moderate–severe limitation of physical function to their heart failure. Disavowal was a distinct approach to self-management, appearing highly salient regardless of when the diagnosis of heart failure was recorded. However, avoidance might sometimes have given way to disavowal, at least among patients under 65. Avoidance and acceptance were highly salient only 3 or more years after the diagnosis at ages 70 and older.
Consensus is lacking on which coping strategies can achieve health gains most effectively. Nevertheless, research findings support clinical observations that ‘hope’, which facilitates and results from coping through disavowal, can promote patient healing and enhance quality of life.20 Moreover, on ethical grounds, no person should be denied hope, for hope is a dynamic life force that helps to give life meaning and value.
Consequently, we support the notion that disavowal is "‘not a problem to be dealt with' but a process we ought to respect."5 It offers a frame of reference for communicating bad news5 and emphasizes the need to produce an environment that can facilitate and protect patients' need to play with reality, alleviate the threat of severe emotional strain and find hope. Therefore, Table 3 suggests strategies that GPs can individualize to facilitate patient disavowal and foster, maintain or strengthen hope (according to patients' stage of hope development) within five domains.21
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GPs can implement such strategies through, for example, their own narratives and recognition of the therapeutic power of the stories they and their patients can tell. Stories can bring messages alive by offering an accessible and personally relevant framework for ordering and interpreting events in time and place.22 Stories can also influence the wholeness of meanings attributed to illness because illness is not only a cause of suffering but a life experience from which learning takes place. Shared acceptance by GPs and their patients of the potential benefits of story telling can promote healing because people respond to the form, or symbolic significance, of treatment and not merely to its content.
The strategies suggested in Table 3, and their implementation through methods such as story telling, can benefit patients directly, or indirectly by promoting GPs' own ‘disavowal of knowledge’.23 By viewing and sharing knowledge as mainly tentative beliefs rather than objective facts, GPs can remind themselves of the importance of intellectual modesty, continued learning and the unknown healing capacity of the human spirit.
These ideas and the strategies outlined in Table 3 lie at the heart of the biopsychosocial model of modern general practice, which takes into account how personality, life experiences, relationships and the environment interplay to influence health and disease. In amalgamating traditional healing and scientific and communicative practice,24 this model helps patients take an active role in their own healing, with the doctor mobilizing this process.25 It requires GPs not merely to tolerate medical uncertainty but, when a life-threatening condition is diagnosed, also to ‘befriend’ it since surprises can occur in idiosyncratic responses to illness.
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Conclusion |
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By drawing on patients' lived experiences, we have built on existing theory to suggest a framework for understanding how patients cope mentally with living with heart failure. At all ages, disavowal appears to provide a distinct coping strategy, operating regardless of the length of time since the diagnosis, and degree of limitation of physical function due to heart failure. Only from age 70 were avoidance and acceptance also highly salient among patients whose heart failure was diagnosed at least 3 years previously and had mildly limited their recent physical function. Overall, disavowal emerges as a coping strategy that many heart failure patients use every day to palliate the emotional strain of their condition and find hope. We have suggested strategies, in five domains, that GPs can implement, for example through story telling, to support patients' disavowal of the personal meaning of their illness.
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Acknowledgments |
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The research for this article was undertaken during the tenure of SB's Repatriation Fellowship of the Health Research Council of New Zealand.
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References |
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