Global urbanization and sedentary lifestyles have contributed to the rise in cardiovascular diseases (CVDs).1 In 2008, 30% of the global deaths (17.3 million) were attributed to CVD.2 Among the various CVDs, heart failure (HF) is regarded as the most prevalent and life-altering disease in most parts of the world.3 It is predicted that the prevalence of HF will rise significantly while the proportion of older people continues to increase rapidly worldwide, as they have the highest incidence of CVD and hypertension.3
Heart failure is defined as a clinical syndrome in which the heart's pumping ability is inadequate to meet the body's needs.4 The severity of HF can be measured using several methods, with the New York Heart Association (NYHA) functional classification being the most common.5 The NYHA measures the limitations on physical activities for patients with HF.6 Because of its chronic progressive nature, HF impacts on the physical, psychological, and social aspects of one's life, thus influencing overall health-related quality of life (HRQOL).5 The general consensus is that HRQOL is a multifaceted construct made up of physical, mental, and social components; it is also acknowledged to be a highly subjective phenomenon based on how an individual evaluates his or her life satisfaction and life experiences.5 Coping strategies help the individuals to adapt to their condition. This literature review aims to provide an understanding of the patient's experiences of living with HF, their learning needs, and copying strategies. The findings will help health care professionals to develop and provide a patient-centered holistic care to improve their HRQOL and satisfaction. Hence, this review will discuss 3 issues: the impact of living with HF, coping strategies, and learning needs.
METHODS
Search strategy
A literature search was conducted with the following 5 electronic databases: CINAHL, ScienceDirect, PubMed, Scopus, and Google Scholar. Search terms included "coping strategies," "life experiences," "heart failure," "learning needs," "perspectives," "quality of life," and "health-related quality of life," and these were used in different combinations. Articles were read and assessed for relevance. The inclusion criteria were (i) peer-reviewed academic journals published in English and between the years 2003 and 2013; (ii) research that focused on the adult's experiences with HF; and (iii) articles with accessible abstracts and full text. Exclusion criteria were (i) editorials, commentaries, discussion papers, conference abstracts, reviews, and duplicates; (ii) journals focusing solely on health care professionals and caregivers; and (iii) studies on congenital heart disease and palliative care.
After screening through the articles, 37 relevant studies were included in the review (Figure). Seventeen were qualitative studies and 20 were quantitative studies. Three major themes were identified: impacts of HF, coping strategies, and learning needs. The characteristics of the reviewed articles are summarized in the Table.
FINDINGS
Impacts of HF
As a chronic, debilitating condition, HF has a major impact on various aspects of an individual's life, influencing the individual's quality of life (QOL). Health care providers often use HRQOL, a multidimensional concept, to understand the impact of chronic disease on patients' well-being, in particular, on physical, psychological, and social well-being.5 Because of the various effects of HF on patients' day-to-day living, it is essential to develop individualized coping strategies to facilitate long-term adaptation and to improve QOL.
Physical well-being
Physical well-being is the state of being physically healthy, not just the absence of disease.7 Physical symptoms of HF have an impact on the patient's perception of physical well-being.4,8-11 The most frequently reported HF-related symptoms were fatigue and breathlessness, followed by dizziness, edema, chest pain, and sleeping difficulties. These findings were consistent with quantitative studies stating that physical symptoms were a major influence on HRQOL.12-14
In addition, studies have found that the severity of these symptoms, if not well managed, could further compromise the individual's functional capacity, thus leading to limitations in the choices of activities.10,14-16 Individuals were also reported to feel a sense of inadequacy as they were restricted by their condition and had lost their freedom.4,9,10,17
Different health beliefs among cultures may result in different experiences of illness. A cross-sectional study conducted by Huang et al14 found that patients in the United States perceived themselves to be more physically impaired than Taiwanese patients. They suggested that this disparity could be attributed to the difference between the individual's lifestyles before and after being affected by HF. However, these authors used different instruments to measure the severity of physical symptoms, and the findings may not be comparable.
Social well-being
Social well-being is a sense of involvement with other people and communities.18 Because of the limitations on physical ability, studies have consistently reported poorer social well-being among patients with HF. Patients felt less confident about their ability to cope with the demands of their previous social lives and, consequently, the loss of their roles in life.4,8,19-21 These roles included gender-specific roles, such as motherhood, socially defined roles within the family context, and work roles.
Side effects from the treatment are associated with social well-being. Several studies identified that the medications for controlling HF-related symptoms brought about certain side effects that impeded the individual's ability to participate in social activities.4,11,17 Side effects such as frequent urination and drug-related impotence affected their social lives and placed a strain on relationships, especially for couples due to sexual disability.9,22 Individuals experienced restrictions on normal socializing, and this was associated with increased social isolation and loss of employment and income.10,17
The relationship between HF and social well-being may vary between patients. Two qualitative studies by Rodriguez et al17 and Thornhill et al21 identified that the loss of a work role had a greater impact on younger patients as they felt that they had lost their purpose in life. On the contrary, older retired individuals were better at accepting the change. This suggests that age may be an important factor in influencing their illness experience due to the differences in life experience and the perception of career limitations. However, both studies used convenience samples, resulting in a majority of male participants. The relationship of HF on the social aspect of QOL for females has not been adequately explored.
Psychological well-being
Psychological well-being is a sense of how happy or contented the individual feels with life.23 As a result of the limitations on physical and social capabilities, patients with HF were subjected to multiple psychological stressors. Studies have examined the various ways these patients react to their diagnoses. They concluded that most patients with HF often expressed intense negative emotions, such as depression, anxiety, and frustrations.8,9,11,19,21 In addition, due to the unpredictable nature of the illness, patients also expressed fear of the unknown, as they were uncertain about the future and even fear of death.8,17,23
Depression in patients with HF
Several qualitative studies have identified depression as one of the most common negative emotions among patients with HF.4,8,9,19 This finding is consistent with many quantitative studies, which examined the variables associated with psychological issues using regression analysis.16,24-29 Through using instruments, such as the Beck Depression Inventory and the Hospital Anxiety and Depression Scale, the researchers found that prevalence of depression ranged from 28.9% to 78% in patients with HF.
The differences in findings may be related to the differences in symptom severity among the study population. Bean et al24 and Son et al28 conducted studies with more than 50% of the patients classified under NYHA class I and II, while both Gottlieb et al26 and Vollman et al29 conducted studies with more than 50% of the patients classified under NYHA class III and class IV. In addition, 2 of the studies did not specify the differences between depressive symptoms and clinical depression.27,29 The differences in the study populations and the instruments used to measure depression could have resulted in the discrepancies in findings, supporting the idea that depression may depend on the study population and the definition being employed.4
Fear and anxiety
Several qualitative studies have also reported other common psychological issues, such as fear and anxiety, among patients with HF. The participants consistently reported that the causes of these psychological issues were due to the unpredictable nature of HF, uncertainty about the future, and the likelihood of death.4,8,19,22,23,30,31 Through the utilization of the Hospital Anxiety and Depression Scale instrument, some quantitative studies registered anxiety prevalence at between 30% and 77%.16,24,25
From the literature, studies suggested that individuals undergo a transition process, and fear and anxiety were associated with the earlier stages of the illness.4,20 However, these negative emotions would subside gradually with adequate support.8,19 Other studies found that fear of death becomes more apparent as the disease progresses, especially during severe episodes of HF-related symptoms.20,21,23 Despite being afraid of dying, death may not always be seen by the individual as a negative issue. A study conducted by Burstrom et al23 suggested that some individuals may perceive the prospect of death as a way to avoid suffering.
In spite of the advancements in HF treatment in improving the individual's physical abilities, the relationship between HF and emotional well-being may vary among patients. A longitudinal study by Goodman et al25 found that anxiety and depression remained high, although physical symptoms improved over 6 months. They attributed this finding to the lack of confidence in the individual's self-care, or their fear, which may have impeded their ability to cope.25 Despite the strengths of a longitudinal study design, the authors did not explain whether they compensated for the difference in study samples between 2 time points: where participants had died (n = 21) or failed to complete the follow-up (n = 17). This may have influenced the results of the findings, as the increase in negative emotions may have been due to the difference in study samples.
Coping strategies
Coping is the cognitive and behavioral attempt made by an individual to manage the impacts of a stressful event.32 In response to the various impacts of HF, individuals have developed diverse coping strategies to overcome the effects of their condition. Without sufficient coping, the individual may suffer from poor physical and psychological well-being.
Types of coping strategies
From the literature, several studies examined the relationship between coping strategies and HRQOL on patients with HF. The 2 common types of strategies were problem-focused and emotion-focused coping.6,16,27,29,33,34 The researchers identified that emotion-focused coping strategies, such as denial, behavioral avoidance, and venting of emotions, were often less adaptive, whereas problem-focused coping strategies, such as acceptance of the condition, sharing the illness experience, receiving support from others, and adjustment to the illness, were considered to be more adaptive.
Relationship between coping strategies and HRQOL emotion-focused coping strategies
Previous studies suggested a relationship between emotion-focused coping strategies and poor physical and psychological HRQOL.6,16,24,29,33,35 They identified that coping strategies, such as denial or behavioral avoidance, would result in an increase in HF-related symptoms due to the delay or nonadherence to treatment, thus resulting in greater depressive symptoms. However, a qualitative study by Hopp et al30 highlighted that certain emotion-focused coping strategies, such as religion or spiritual support, have a positive influence on HRQOL. The study was conducted using both individual and focus-group interviews. The researchers concluded that individuals who followed religious beliefs and coped with spiritual support found greater meaning in life. However, the informants comprised African American participants. Thus, their findings may not be demonstrative of patients with HF from another context, as cultural values may be different.
Problem-focused coping strategies
Problem-focused coping strategies were reported to be significantly associated with physical and psychological HRQOL.29,33,34,36 The use of problem-focused coping strategies had led to fewer depressive symptoms, increased adherence to treatment regimens and fewer HF-related symptoms.
However, problem-focused coping strategies are not always associated with a positive effect on the individual. Several qualitative studies reported that individuals who receive support from others perceived themselves as a burden to others and felt they had lost their independence.8,9,21,37 Support is appreciated only if independence is maintained, and the individual has control over their situation.10,37 A cross-sectional study suggested that problem-focused coping was associated with a lowered QOL.24 The findings were attributed to the increase in anxiety, as possible problem-focused coping strategies had already been applied and worn out, leading to a heightened awareness of the severity of the individual's illness.24,27 A longitudinal study also demonstrated that there was no relationship between problem-focused coping strategies and patients' HRQOL.27
Among the literature discussing coping strategies and HRQOL, a common limitation of these studies is that the samples comprised mostly males or white participants. Thus, these findings may not be representative of patients with HF from other countries.
Culture and belief
Of the reviewed literature, few studies have placed emphasis on the importance of the cultural differences of the individual and their influence on health belief. Some authors have reported that the differences in culture were not related to the illness experience and coping strategies,14,25 while others suggested otherwise.1,30,38,39
A qualitative study conducted in Malaysia highlighted that problem-focused coping strategies, such as diet and adherence to treatment, might be influenced by cultural belief.1 Although lifestyle modification is important for patients with HF, the researchers noted that the participants shared the belief that the sick should consume more water "to reduce heat and cleanse the body" and remove excess medicine from the body.1 However, the sample of the study (n = 20) comprised mostly male participants (n = 15). Thus, studies that examine cultural and gender differences are needed.
Learning needs
Both quantitative and qualitative literature consistently reported the need for informational knowledge as the main concern among patients with HF. Patients with HF need to follow a strict treatment regime, such as adhering to medications, a low-sodium diet, and fluid restriction. Thus, knowledge about treatment and rehabilitation is important when promoting adherence to the regime and effective self-management of the condition.22,40
Relationship between learning needs and coping
No study has demonstrated a causal relationship between patients recognizing their need to learn and the ability to cope with HF. However, a recent study suggested that individuals with sufficient knowledge about their illness acknowledge that information may improve illness management and outcomes.38 This is supported by another study indicating that the individual's knowledge about illness was associated with HRQOL and the use of coping strategies.40 However, both studies were cross-sectional in design, thus causal relationships cannot be evaluated. In addition, the former study excluded patients with hypertension and valvular heart disease, while the latter involved only female participants (n = 35). Thus, it is necessary to explore a diagnostically diverse sample from both genders in the future.
Informational support
Qualitative studies revealed that patients with HF expressed an interest in knowing more about their medications, treatment options, and ways to manage their current state of health.17,22,37 This finding is echoed in 3 quantitative studies that identified HF-related symptoms and medications as the top learning needs, which patients with HF perceived to be most important.38,39,41 All of these studies used the Heart Failure Patients' Learning Needs Inventory, and the mean scores varied among the 3 studies, with the United States being the highest (mean = 3.955) and China being the lowest (mean = 3.291).38,39,41 This suggests that factors such as cultural differences may influence the patient's perception of the importance of learning needs. Both Kim et al38 and Yu et al39 suggested that Asian patients tend to depend on the recommendations of health care professionals as a sign of respect for authority. The former attributed this to the paternalistic influence from the family, while the latter ascribed this to the Chinese belief that maintaining harmony is cardinal. Thus, the differences in cultures are associated with the perceived importance of the learning needs. However, both Kim et al38 and Yu et al39 examined samples comprising mostly of NYHA class I and II patients, while Clark and Lan41 did not indicate the severity of HF of their participants. As these individuals may have different severities of HF, they may have different expectations of learning needs. In addition, these studies adopted a questionnaire approach and could identify only the content of learning needs. Hence, more in-depth research is necessary to explore patients' knowledge and their learning needs.
Several studies suggested that although information was provided through written or verbal means, patients with HF still had difficulty in managing and understanding their condition.11,20,22,23,42,43 The researchers attribute this to the language of the self-management information delivered. Some authors also identified that individuals were left to develop their own strategies to manage their condition, thus exposing them to danger.20,22,42 One qualitative study conducted by Boyde et al43 in Australia identified that conflicting information from different health care providers also contributed to the difficulty in managing and understanding the individual's condition. Through interviewing a purposive sample of 12 participants, the authors found that individuals were confused by conflicting information and eventually lost faith in the health care professionals. Notably, the need for appropriate informational support was apparent.
DISCUSSION
This review examined the recent literature on the experience of patients with HF, the coping strategies they adopted, and their learning needs.
The overall QOL of patients with HF is greatly affected by the presence and severity of HF-related symptoms. The impact extends beyond physical health and into the social and psychological aspects of the individual's life. The review also illustrated that individuals adopted diverse coping strategies to overcome the effects of their condition. Patients with HF need to follow a strict treatment regime. If their learning needs on the management of HF could be identified and fulfilled, their ability to adopt appropriate coping strategies and make decisions about self-care may be enhanced and their QOL improved.
A significant gap is that the majority of the studies were carried out in the Western countries, namely, the United States, the United Kingdom, and European countries. Of the 37 studies reviewed, only 4 quantitative studies were conducted in Asian countries such as China, Korea, and Taiwan.14,28,38,39 The review reveals that no qualitative study that explores the patient's experience of living with HF has been conducted in the Asian context. This narrative review showed that differences in the individual's lifestyle and cultural beliefs are associated with their perspective of HF and their ability to manage and cope with HF and its consequences.1,14,30,38,39 Hence, existing findings may not be applicable to other countries with dissimilar cultures.
Many studies that were included in this review focused on the negative aspects of patients' experiences with HF, and most of the qualitative studies had mainly explored male participants' perspectives.17,21,43 This does not allow comparison of the differences in experiences between genders. In addition, while studies had been conducted with patients at various stages of HF, there is a lack of information regarding the experiences and learning needs of patients with a more severe class of HF, specifically NYHA class IV. Thus, more studies with a diagnostically diverse sample from both genders would provide a more in-depth understanding of their experiences, perceptions, and needs while living with HF.21,38
Limitations and conclusion
While this review may not have included all the relevant published literature due to the limited databases examined and the language criterion, this narrative review meets the specific aim of summarizing empirical evidence concerning experiences of patients with HF and identifying their coping strategies and learning needs. Current evidence highlights the need to conduct studies to address the research gaps and to better understand the experiences, coping strategies, and learning needs of patients with HF in an Asian society. This literature review serves as a basis for future efforts to promote patient-centric holistic care and improve patients' HRQOL through meeting their needs.
REFERENCES