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European Journal of Heart Failure 2005 7(4):592-603; doi:10.1016/j.ejheart.2004.07.008
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© 2005 European Society of Cardiology

Family caregiving and congestive heart failure. Review and analysis

Gerard J. Molloya,*, Derek W. Johnstonb and Miles D. Withamc

a School of Psychology, University of St. Andrews St. Andrews KY16 9JU, Scotland
b School of Psychology, University of Aberdeen
c University of Dundee, Ninewells Hospital and Medical School, Section Ageing and Health Dundee DD1 9SY, Scotland

* Corresponding author. Tel.: +44 1334 461983; Fax: +44 1334 463042. E-mail address: gjm6{at}st-andrews.ac.uk


    Abstract
 Top
 Abstract
 1. Introduction
 2. Methods of search...
 3. Results of search...
 4. Discussion
 5. Conclusion
 References
 
Background: There is increasing evidence that discharge planning and post-discharge support for CHF patients can contribute greatly to the medical management of heart failure (CHF) in the community and that the quality of the CHF patient's close personal relationships can influence outcome in CHF. However, there has been little research on the impact of CHF on the family or the role of the family in the management of the condition. In this paper, we provide a review and analysis of studies that have explicitly investigated these issues in the informal carers of CHF patients.

Results of the review: Sixteen papers were identified that examined the role and/or impact of informal caregiving for CHF patients. Our main findings were: demands specific to CHF caregiving were identified, e.g., monitoring complex medical and self-care regimen, disturbed sleep and frequent hospitalisation of patients. Relatively high levels of emotional distress were identified in CHF caregivers. Few studies explicitly investigated the role of informal carers in the management of CHF. Studies were limited in number, scope and quality.

Conclusion: Caring for a family member with CHF can affect the well-being of those responsible for care, which may have consequences for the CHF patient's health. Further studies are needed to clarify these issues and to examine the role of informal caregivers in the management of CHF in the community.

Key Words: Caregivers • Spouse • Depression • Burden • Stress

Received December 19, 2003; Revised June 26, 2004; Accepted July 12, 2004


    1. Introduction
 Top
 Abstract
 1. Introduction
 2. Methods of search...
 3. Results of search...
 4. Discussion
 5. Conclusion
 References
 
Patients with congestive heart failure (CHF) are by definition functionally impaired. Individuals with highly symptomatic CHF experience marked to severe limitation of physical activity [1]. Given that 1–2% of the general population in developed countries have CHF [2] and that this figure is expected to rise, CHF is fast becoming a leading cause of disability among older adults in many industrialised nations with consequent burden on health services.

Comprehensive discharge planning and discharge support for CHF patients is increasingly being viewed as an important means of reducing this burden of care [3]. For example, home-based nurse interventions have shown promising results in several studies and there is growing support for the widespread application of this type of post-discharge care [4]. However, research into discharge planning and discharge support for CHF patients has surprisingly proceeded for the most part, without the inclusion of the informal caregivers of CHF patients into research designs. While most clinicians are aware that CHF is associated with a worse quality of life than most forms of cancer and other chronic diseases [5] and that caregiver support is extremely important, the available research literature does not explicitly reflect the important role that carers may have in managing the illness.

The following review firstly characterises the demands that the informal caregivers of CHF patients often face. Secondly, the reasons why informal caregivers warrant the attention of CHF researchers are outlined and finally a review and analysis of the studies that have looked at informal caregiving in CHF is provided.

1.1. What are the caregiving demands of CHF patients?
Due to the considerable levels of disability in general ambulation and managing the household that can be attributed to CHF [6], individuals with moderate to severe CHF are often reliant on family or friends for assistance with instrumental activities of daily living (IADLs, e.g., shopping, house keeping) and sometimes even activities of daily living (ADLs, e.g., bathing or dressing) [1]. Family members caring for an individual with CHF may also often have to endure and attend to a range of problems, which are outlined in Table 1. The combination of these factors has the potential to severely impact upon individuals providing informal care for CHF patients.


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Table 1 Caregiving demands in congestive heart failure

 
1.2. Why is informal care important in CHF?
1.2.1. Benefit to the CHF patient
The availability of a spouse or other family relative is likely to be of benefit to the CHF patient in improving overall quality of life of the patient and in assisting the medical management of the condition [15]. Indeed, a growing body of evidence has found associations between key social relationships and prognosis in CHF. The mechanisms whereby such support promotes health, however, still remains elusive. Murberg and Bru [16] found that social isolation, after controlling for depressive symptoms, heart failure severity, functional status and age is a significant predictor of patient mortality. Another recent study [17] found that, among elderly female patients hospitalised with clinical heart failure, the absence of emotional support, measured before admission, is a strong, independent predictor of the occurrence of fatal and nonfatal cardiovascular events in the year after admission. Coyne et al. [18] found that, when marital quality and NYHA class are considered jointly, they both make independent, statistically significant contributions to the prediction of patient mortality. It appears that the presence of informal supports has a positive effect on CHF prognosis and that social isolation, particularly single marital status appears to be associated with poorer outcomes [19]. The beneficial effects of social support on CHF prognosis found in theses studies, however, may come at a psychological and physical cost to the individuals providing the support.

1.2.2. Detriment to the informal caregiver
Research across a variety of clinical conditions has consistently found that providing care to a functionally dependent family member or friend contributes to psychiatric and physical morbidity in informal caregivers [20,21]; however, arguably more significantly from a public health perspective are findings by Schulz and Beach [22], who have recently shown that informal caregiving is an independent risk factor for mortality. After adjusting for sociodemographic factors, prevalent disease and subclinical cardiovascular disease, individuals who were providing care and experiencing caregiver strain had mortality risks that were higher than noncaregiving controls (relative risk [RR], 1.63; 95% confidence interval [CI], 1.00–2.65). These findings give research examining the role and impact of informal caregiving in all illness categories an added urgency.

1.3. Why should CHF informal caregivers be studied?
It is clear that the illness groups that have been most heavily studied in the caregiver literature, e.g., Alzheimer's (AD) and dementia related diseases [20], stroke [23] and cancer [24] are associated with demands on the caregiver that one would not necessarily expect in CHF, e.g., cognitive decline, behaviour problems, pain and nausea, etc.; however, this should not preclude the specific study of individuals providing informal care for CHF patients, as this illness poses several unique challenges for family caregivers, as outlined in Table 1. As Biegel and Schulz [25] have argued each patient population poses distinct caregiving challenges and researchers should attempt to separate the disease specific from the general aspects of caregiving.

Despite the increasing incidence and prevalence of CHF [26] and the potentially high caregiving demands, particularly in moderate to severe CHF, there are few comprehensive studies that have systematically examined the physical and psychological impact of CHF on informal caregivers or that have examined the role of informal caregivers in managing the disease. This relative neglect of CHF informal caregivers is in stark contrast to other leading causes of morbidity and mortality such as stroke and cancer, both of which have an extensive caregiving literature [23,24]. To illustrate the neglect of CHF in the caregiving literature, a Web of Science search using ‘caregiver— and each of ‘heart failure—, ‘stroke— and ‘cancer— separately as keywords for a 10-year period between 1992 and 2002 retrieved 13, 99 and 195 documents, respectively. This relative neglect may be explained by the fact that CHF is an ‘emerging— health issue in comparison to stroke and cancer and as a result, both the biomedical and the psychosocial aspects of CHF research are in their infancy by comparison.

Given the magnitude of the problem of CHF and its relative disregard in the caregiving literature, an up to date review of the state of knowledge about informal caregiving in CHF is therefore needed. The purpose of this paper is to provide a review and analysis of published studies that have examined informal caregiving in CHF. We have developed five specific aims for this review (i) evaluating the effects of CHF on caregivers' well-being, (ii) evaluating the role of informal caregivers in the management of CHF, (iii) outlining policy and practice implications of current studies, (iv) outlining the limitations of current research and (v) identifying future avenues of research relating to caregiving in CHF.


    2. Methods of search strategy
 Top
 Abstract
 1. Introduction
 2. Methods of search...
 3. Results of search...
 4. Discussion
 5. Conclusion
 References
 
A literature search for relevant articles was conducted on three databases (PsychINFO, Medline and Web of Science) for the period 1993–2003 using the following key words: heart failure, cardiac failure, carer, caregiver, partner, spouse and family. Articles were selected using the criteria listed in Table 2. The search criteria were deliberately inclusive because of the neglect of this topic in the literature.


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Table 2 Inclusion criteria of articles selected for review

 

    3. Results of search strategy
 Top
 Abstract
 1. Introduction
 2. Methods of search...
 3. Results of search...
 4. Discussion
 5. Conclusion
 References
 
Sixteen studies were identified. Thirteen studies that used quantitative methodology are summarised by study population characteristics (both patients and caregivers), research design, outcome-measures used and key results in Table 3. The three studies that used qualitative methods are discussed in Section 4.1. The findings from all 16 studies are discussed in light of the review aims and previous findings in other chronic conditions.


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Table 3 Summary of quantitative CHF caregiving identified by the search strategy

 

    4. Discussion
 Top
 Abstract
 1. Introduction
 2. Methods of search...
 3. Results of search...
 4. Discussion
 5. Conclusion
 References
 
4.1. CHF caregiving and caregiver well-being
4.1.1. Prevalence of emotional distress
Measures of emotional distress such as depression and anxiety are important outcomes in the wider caregiver literature and most studies have shown that informal caregiving is associated with increased levels of emotional distress [20]. Only four studies in the present review included standardised and psychometrically validated measures of emotional distress [27–30]. The largest of these studies found that 21% of the sample (N=156) scored >16 on the Center for Epidemiological Studies Depression-Scale (CES-D), indicating depressive symptomatology [29]. The mean CES-D score for their sample was 11.4 (S.D. 8.8), which is comparable to a recent meta-analysis, which found that the mean CES-D score for 57 caregiver studies using this measure was 11.5 (S.D. 2.9) [39]. This finding suggest that CHF caregivers may have at least comparable levels of emotional distress to those patients caring for patients with other chronic conditions that are known to detrimentally affect informal caregivers. The relatively small samples of these studies, as with other caregiver studies, may have been subject to sampling bias, with caregivers with very mild and very severe levels of caregiving-related emotional distress underrepresented [40].

4.1.2. Predictors of caregiver well-being
Several predictors of CHF caregiver well-being were identified in this review. Two studies found that gender was important with female caregivers having lower levels of emotional well-being [30,31]. Female caregivers also reported more difficulty in performing helping behaviours to CHF patients in one study [38]. In the reviewed studies of CHF caregivers, neither age of caregiver nor relationship to patient, however, were related to indices of caregiver strain or burden.

In other illness populations, female caregivers have been found to be consistently more distressed [41,42]. The two other well-established demographic predictors of caregiver outcomes are relationship to patient and age of caregiver [20]. Having a closer relationship to the care recipient and being younger are both associated with poorer mental health outcomes for caregivers. For example, spousal caregivers and younger caregivers have generally been found to report greater caregiving strain than non-spousal caregivers [43]. These patterns were not examined in the identified studies.

CHF patient symptoms have not been consistently related to caregiver well-being. This is in contrast to other caregiver populations, e.g., Alzheimer's disease [39] and stroke [44]. Rohrbaugh at al. [30] found that NYHA class was not related to spousal emotional distress, while Martensson et. al [28] found that, perhaps counter intuitively, higher functional status, as defined by NYHA class was related to poorer mental health. This recent finding was in a small sample (N=48); however, it may well be that a higher functioning patient has the potential cause more problems for informal caregivers. For example, it has been argued that burden in AD caregivers does not follow a linear trajectory with functional/behavioural impairment, but peaks in the middle phases of AD when behavioural disturbances are most problematic [45]. It may well be that informal caregivers are most distressed in the mild to moderate stages of CHF. Patients may have difficulty accepting the seriousness of the illness in the mild to moderate stages, but may become resigned to it in the more advanced stages when symptoms and activity limitations increase.

However, in a meta-analysis of the wider informal caregiving literature, Pinquart and Sorensen [39] have found that higher levels of burden are generally related to higher levels of impairment in the care recipient. Indeed, it seems likely that patients who are experiencing more symptoms are more likely to require more assistance; therefore more demand on the caregiver and the greater the potential for poor outcomes. However, this issue remains unclear with regard to CHF caregivers. Further research is needed to resolve this apparent paradox.

Bull et al. [34–36] found that CHF family caregivers that were offered more involvement in discharge planning had higher scores on satisfaction, feelings of preparedness and were more accepting of their caregiving role than family caregivers who were not offered involvement in discharge planning. In follow-up of this data, caregivers who reported more involvement in discharge planning also reported better health.

Social support to informal caregivers has been consistently found to predict better outcomes for informal caregivers [46,47]; however, the one study that did examine social support in CHF caregiving did not find the predicted moderating effect of social support on depression [27]. Caregiver personality factors have also been shown to relate to caregiver outcomes [48,49]; however, the reviewed studies did not examine these type of predictors.

4.1.3. Caregiver health
Self-reported health was measured using the Short Form-12 or the Short Form-36 (SF scales) in six studies [28,29,31,34–36]. The mean Mental Health Scores (MHC) using the SF scales were 51 (S.D. 8) for Evangelista et al.'s [31] study and 46 (S.D. 7) for Martensson et al.'s study [28], indicating approximately normal mental health, as the maximum score is 100 and means for population studies in this age group are around 51 (S.D. 10.2) [50]. However, as with measures of emotional distress, a lack of matched noncaregiving comparison group data in these studies prevent firm conclusions to be drawn about whether MHC scores were significantly different in CHF caregivers. Martensson et al.'s study [28] was the only study that provided a mean score for Physical Component Summary (PCS) of the SF-12, for their entire caregiver sample (PCS mean for CHF spouses was 40.2, S.D. 4.4). This score is slightly lower than US population norms for women in this age group (PCS mean for women between 55 and 64 years is 46.3, S.D. 11) [50], indicating poorer health.

4.1.4. Caregiver appraisal
Caregiving specific measures of burden/strain or satisfaction have been widely used in other chronic conditions and have proven reliability and validity [51]. Such measures provide an index of the perceived affective, cognitive, somatic and behavioural consequences that arise as a result of informal caregiving. Only Schwarz and Elman's study [29] included this type of measure in their study design. They found that caregiving satisfaction was not related to hospital readmission of CHF patients.

These types of measures are particularly sensitive to affective changes relating to informal caregiving and they may detect effects that generic measures of emotional distress or well-being fail to. Given the value of this type of measure in Schulz and Beach's study [22] predicting mortality, it is recommended that such measures be included in future CHF caregiver studies. Comparing longitudinal burden or strain measures between caregiving groups would also provide valuable insights into when along the illness trajectory is caregiving most difficult. This might suggest an optimal time for caregiver interventions. For example, interventions for caregivers might be of no discernible immediate benefit when the care recipient is NYHA class I, whereas strong immediate effects may be found when the care recipient is NYHA class III.

4.1.5. Qualitative findings
A number of research studies using qualitative methods were found [10,14,52]. Several interesting findings emerged from these studies. Brostrom et al.'s study [14] examined the influence of CHF related sleeping disorders on the social support provided by CHF patient's spouses. In this study, respondents indicated that spousal support of the CHF patient may be negatively influenced by sleep disturbances as a result of the patients' symptoms of CHF and anxiety in relation to the disease.

Martensson et al.'s study [10] aimed to describe situations experienced by the spouses of patients with CHF that could potentially effect their ability to provide support to the patient. Firstly, when the spouse experienced involvement with others, e.g., when the spouse got help from friends or family, appreciation from the patient or was included in the care of the patient, caring experiences were viewed as positive. However, caring experiences were viewed as negative when the spouse felt like an outsider. For example, when the spouse could not participate in usual social activities as a result of the physical or psychological consequences of CHF on the patient or when the spouse did not receive support or recognition from friends family or the health care system.

Finally, Mahoney's [52] study used narratives from CHF patients and family members to characterise the interruptions, confusion and efforts to adapt that caregivers experience while caring for CHF patients.

4.2. The role of informal caregivers in the management of CHF
It has been estimated that up to two thirds of CHF hospitalisations are preventable with poor compliance to medical regimens and failure to seek help for escalating symptoms being primary reasons [53,54]. Surprisingly, there appears to be little research examining the role of informal caregivers in the management of CHF, despite the recognition in several papers that informal supports have the potential to assist tertiary prevention in CHF [7,15], particularly in relation to compliance enhancement, facilitating self-care and seeking treatment for worsening symptoms. This implicit recognition of the important effect that CHF patient's informal carers may have in managing the disease has not been adequately met with explicit efforts to incorporate these individuals into CHF research.

Two studies examined the educational needs of informal caregivers of CHF patients. Walden et al.'s [32] study found that both patients and their caregivers wanted more information on several aspects relating to the condition including issues relating to quality of life, honest explanations about the condition and information about what to do in dealing with an emergency. Westlake et al.'s study [37] focused specifically on the concerns of patients and spouses relating to sexuality. They found that both patients and caregivers in their sample reported a moderate to high need to receive specific information about sexual activity. Other studies have shown that there is often a lack of knowledge or misconceptions among patients about CHF [55]. These studies examining the educational needs of informal caregivers recognise that family members may have an important role to play in the management of CHF.

4.3. Policy and practice implications of current studies.
4.3.1. Carer distress
The reviewed studies have several implications for policy and practice. Firstly, the relatively high levels of distress and poor mental health identified in the caregivers of CHF patients [28–31] would suggest that attention should be given to the well-being of the patient's family in managing CHF. Two separate lines of inquiry suggest that depression and anxiety are worth further investigation in the informal caregivers of CHF patients. CHF has been consistently associated with higher levels of emotional distress in patients [8, 9] and there is a compelling body of evidence looking at dyadic coping, i.e., couples, patient–spouse or patient–caregiver, which suggests that emotional distress is more common in caregivers if the patients are distressed [48]. There is also a related body of work demonstrating spousal similarity in psychological distress [56]. Together, these findings would suggest that further investigation of the extent, causes and consequences of emotional distress in the informal caregivers of CHF patients is warranted, due to the reciprocal influence of emotional distress in patient/caregiver dyads. Finally, Schwarz and Elman's [29] finding that the interaction of caregiver stress and depression was associated with increased risk of CHF patient readmission is also worth further consideration. Caregivers who have high levels of stress and depression may be less able to fulfil their caregiver role, which could potentially increase the chance of patient readmission.

4.3.2. Specific carer and patient education
Westlake et al.'s [37] and Walden et al.'s [32] studies suggest that there are currently deficits in the information that patients and their family receive about living with CHF, which may effect the successful management of the condition and impair patient and caregiver quality of life. Specifically, routine information should be given to CHF patients and their family members about living with and managing CHF, and in particular details about the safety of sexual activity should be provided.

4.3.3. Involving caregivers in care
The findings from Bull et al.'s studies [34–36] would suggest that empowering caregivers by involving them in patient care may have the potential to ameliorate the negative consequences of caregiving and increase the willingness of family members to provide support for a care needing relative. Martennson et al.'s [10] qualitative study also found that caregiver involvement in care was associated with a more positive view of caring. These findings would suggest that health care professional should endeavour to recognise the impact of the illness on close family members and include them in the management of CHF patients whenever possible.

One recent RCT in the stroke caregiver literature found that an intervention that targeted caregivers by training them to provide care reduced health care costs, caregiver burden and perhaps more importantly improved patient psychosocial outcomes [57]. Perhaps, the family members of CHF patient's could be trained to care more effectively, which could have possible benefits for CHF patients, e.g., symptom control and reduce health care costs. However, such interventions would have to be offset against any potential adverse effects of increasing family member's responsibility for the CHF patient's health.

4.4. Limitations of current research
4.4.1. Study design
As Table 3 clearly demonstrates, the majority of study designs were quantitative cross-sectional studies. Prospective longitudinal and randomised controlled trials (RCTs) study designs examining CHF caregiver outcomes are required in order to clarify several issues. It is increasingly recognised that there is an economic imperative to promote community-based care of CHF patients [3,4]. Given the importance of informal caregivers in the management of CHF patients in the community, clinical trials should assess the impact of interventions on patient's primary support persons. No RCT's examining CHF caregiver outcomes were found. Increasingly, in the Alzheimer's caregiver literature RCT designs have been employed to examine the effect of interventions designed to improve caregiver outcomes [58–60]. These studies have had moderate effects on caregiver outcomes. At present, these type of studies are lacking in the CHF literature.

4.4.2. Representative samples
There was great variability in how CHF caregivers were sampled and defined. In a number of studies caregivers were not operationalised, as such. Defining caregivers loosely has been singled out as a possible confound of the wider literature and has the potential to call into question the meaningfulness of research findings [61,62]. A number of studies recruited only spousal caregivers, which has the benefit of controlling for the effect of relationship to patient, but perhaps biases the sample, as many CHF patients are elderly and single. Married individuals tend to have better health than unmarried or widowed patients [63]. Not all studies provided sociodemographic details of their caregiver samples. This is important when comparing studies or explaining anomalous findings.

The clinical characteristics and sociodemographics of the care-recipient should also be recorded in caregiver studies. This provides valuable information when evaluating how representative samples are. Some samples were clearly caring for a more functionally limited patient sample than others. The distribution of the care-recipient sample across the four NYHA categories is clearly a useful piece of information, as this classification is based on CHF patient symptoms. The percentage of patients in classes III and IV in particular, i.e., those most likely to be care -needing, given this limitation-based classification, is clearly a useful piece of information. However, only 8 of 16 studies included enough clinical detail in order to establish this. In addition, mean and standard deviation scores for left ventricular ejection fractions (LVEFs) are also a useful index of the severity of CHF in patient samples. These are routinely provided in studies examining CHF patients. This allows comparisons across studies. Only 6 of 16 studies included means and standard deviation for patient LVEF. Other clinical and sociodemographic characteristics that could shed light on caregiver outcomes include, patient neurohormonal assays, catecholamine assays, types of treatment that patient is receiving (both pharmacological and non-pharmacological), etiology of heart failure, patient's VO2 max, patient quality of life, patient anxiety or depression, time since diagnoses of CHF, patient age, availability of home-help for patients, patient co-morbidities, patient 6-min walk distance and patient socioeconomic status.

4.4.3. Weakness of measures
The use of heterogeneous measures in these studies also prevents the development of a cumulative body of knowledge on the subject. A number of studies used measurement instruments that have not received extensive validation and the psychometric properties of some self-report measures were not recorded [38]. This calls into question the reliability and validity of such measures. Future studies should endeavour to use measurement instruments that have proven reliability and validity and that can be meaningfully compared to other caregiving studies in different illness categories.

Reliability of measures of functional ability in CHF patients that are obtained from caregiver self-reports may be questionable [38]. Several studies have shown that caregivers personality characteristics can influence reports of patient impairment, e.g., caregivers high in neuroticism report significantly more impairment in patients than patients themselves [48]. Both self-report and objective measures should be used when measuring caregiver stressors.

While self-rated health measures such as the Short-Form 36 have proven reliability and validity [50,64] as outcome measures, increasingly, in the caregiver literature biomedical indices of health status are also measured, including various measures of immune function [65], blood pressure [66], infectious illness episodes [67], physician visits [65] and mortality [22]. The inclusion of such objective measures in study designs provides a more compelling case for the health effects of caregiving stressors and indeed the positive effects of interventions aimed to reduce negative consequences of caregiving. Future studies should attempt to measure such objective outcome measures of health.

4.4.4. Sample size and statistical power
The sample size of the reviewed quantitative studies ranged from 41–189 (mean 103, S.D. 52). Only 1 [29] of the 13 quantitative studies reported statistical power for testing the stated hypothesis. This raises concern about the ability of the studies to answer research questions.

4.5. Future avenues of research relating to caregiving in CHF
There is indeed a dearth of literature examining the impact of informal caregiving in CHF. However, the body of work reviewed points to several worthwhile avenues of research relating to caregiving in CHF.

4.5.1. Caregiver strain and CHF severity
Further longitudinal examination of the relationship between CHF illness severity and caregiver distress are recommended as two plausible contradictory hypotheses can be generated from previous literature. High functioning CHF patients may be associated with higher levels of reported caregiver strain or distress [28] than poorly functioning CHF patients, perhaps because these individuals may have more variable and unpredictable care needs and may be less likely to comply with medical advice and engage in healthful self-care behaviour due to the mild nature of their symptoms. Indeed, in the MI literature, Mayou et al. [68] found that wives of MI patients who had returned to work within two months showed more strain than wives whose husbands were still at home. On the other hand, poorly functioning CHF patients may also be associated with higher levels of strain or distress due to the higher levels of dependency associated with the later stages of the disease [34]. Longitudinal study of patient and caregiver variables would resolve this issue and provide valuable information for interventions to improve patient and caregiver outcomes.

4.5.2. Enhancing adherence to medical regimens and health behaviour advice
Several studies have argued that non-compliance is common in elderly heart failure patients [55]. Rich et al. [69] found that patients living with another person tended to be more adherent to their medication regimen than patients living alone. Informal caregivers, particularly close family members, are ideally placed to enhance compliance to medical advice. Indeed, health professionals caring for patients with CHF could look at informal caregivers as part of the non-pharmacologic armoury in treating and managing CHF. It has been argued that interventions that target both patients and their informal caregivers are more likely to enhance compliance with complex medical regimens than targeting patients alone [15]. Further compliance research particularly home-based interventions, incorporating informal caregivers into research designs are needed.

4.5.3. Assessing the impact of interventions for patients on their caregivers
Randomised controlled trials of drugs, exercise or self-management programs in CHF patients do not routinely include measures of caregiver well-being in evaluating outcome. Given the increasing evidence that caregiver and care-recipient well-being and quality of life appear to be related, assessment of the impact of trials on caregivers is warranted. Indeed, significant effects of patient interventions on caregiver outcomes provide further supportive evidence for the implementation of particular interventions.

4.5.4. Education of patients and caregivers
It has been suggested in a number of studies that counselling and education of patients is an essential part of the non-drug management of CHF, as it may enhance long-term adherence to CHF management strategies [15,70]. However, none of the reviewed studies examined the effect of knowledge on patient or caregiver outcomes. This type of study is necessary before it could be argued that counselling or education for CHF caregivers is beneficial. It may be that comprehensive education or counselling programs have little or no effect on important outcomes, or possibly even a negative effect for family caregivers. Indeed, it is likely that extensive information may have the potential to create emotional distress, such as anxiety or depression in patients and family members. For example, should the sobering mortality rates of CHF be explained to patients and family members? Research should establish what type and what level of information has the potential to improve physiological, cognitive, emotional and behavioural outcomes for patients and their caregivers.

4.5.5. Identifying pathogenic caregiver behaviour
There is also empirical support that social relationships may in exceptional circumstances have deleterious effect on the health of the care-recipient [71]. While we have argued that informal caregivers have the potential to improve patient outcomes in CHF, it is also worth remembering that individuals close to the CHF patient may also have the potential to detrimentally affect patient outcomes. Future studies should also endeavour to understand the CHF patient's reactions to being helped by family or friends.

4.5.6. Informal caregivers—whose responsibility: specialist, GP or nurse?
The idea of a care triad between the physician, the patient and the patient's closest family member has been discussed and advocated for a number of years in the field of geriatrics [72,73]. However, there is little discussion on the relative role of specialists, GP's or nurses in facing the problem of caregiving. Elucidation of each of these group's roles may be particularly important in CHF, where patients and caregivers may come into contact with each type of health care provider on a regular basis. Further research needs to identify and clarify the role of the various health care specialists in addressing the problems faced by informal caregivers.


    5. Conclusion
 Top
 Abstract
 1. Introduction
 2. Methods of search...
 3. Results of search...
 4. Discussion
 5. Conclusion
 References
 
While it is obvious that the CHF patient will be the main focus of health care professionals endeavours in CHF treatment, the reciprocal effects of the disease on close family members and patients are key to understanding the progress of the disease. It is surprising that there are so few studies examining issues surrounding informal caregiving in CHF, given the extent of the problem and the potentially high demands that family members may face, particularly in the advanced stages of the condition. This is particularly striking in light of several recent studies demonstrating the benefits of home-based care for CHF patients and the vast literature examining informal caregiving in other clinical conditions.

Many of the studies reviewed here were weak in conceptualisation and methodological rigor. In order to optimise the management of CHF patients, further longitudinal studies examining the informal caregivers of CHF patients is required. The availability of social support is an important prognostic indicator of outcomes and has the potential to improve outcomes in CHF by enhancing tertiary prevention. Burdensome CHF caregiving may be an important predictor of ill health, which has consequences not just for the caregiver but also for the CHF patient, who is often dependent on the good health of close family or friends in order to remain in the community. In addition, the economic value of informal care in managing CHF may be considerable, as estimates have shown that the value of informal care for ill and disabled adults may be equal if not greater than national health care budgets [74]. Obviously, health services cannot replace the care provided by informal carers, but they could provide more effective ways to support and empower the family caregivers of CHF patients, which may have the potential to improve outcomes for the carer, the patient and reduce health care costs.


    Acknowledgements
 
Many thanks to Professor Marie Johnston, School of Psychology, University of Aberdeen, who reviewed an earlier draft of this paper and Professor William Haley, University of South Florida, who provided some helpful comments.


    References
 Top
 Abstract
 1. Introduction
 2. Methods of search...
 3. Results of search...
 4. Discussion
 5. Conclusion
 References
 

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