Informal Caregivers’ Experiences of Caring for Patients With Chronic Heart Failure

Abstract

Background:

Increasing evidence suggests that family support for patients with chronic heart failure (CHF) contributes greatly to the disease management of CHF. In addition, the quality of the CHF patient’s close personal relationships can influence CHF outcomes. However, caregivers cannot provide care alone and need guidance, support, and skills to manage care that is often complex. In this article, we provide a review of studies that have explicitly investigated these issues of informal caregivers to CHF patients.

Objective:

The objective of this study was to explore informal caregivers’ views and experiences of caring for patients with CHF.

Methods:

This is a systematic review and synthesis of qualitative studies describing informal caregivers’ experiences in home-based care. Data sources were published literature written in English from electronic databases: PubMed, CINAHL (1982–2009), PsycINFO (1967–2009), EMBASE (1980–2009), and the Cochrane Library Database. Ten primary studies met the inclusion criteria.

Results:

A number of themes emerged. Five key themes were identified from synthesis of the studies: sharing of caring, suffering from anxiety, being isolated, enjoying a good relationship, and searching for support.

Conclusions:

Caring for persons with CHF can affect the well-being of their informal caregivers, which may ultimately 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.

Chronic heart failure (CHF) is a complex syndrome caused by a number of different factors. It is characterized by breathlessness, associated intolerance to exercise, and fluid retention. In many countries, CHF is becoming a leading cause of disability among older adults, which has a consequent burden on health services. In the United States, 5.8 million people reportedly have heart failure (HF), with an annual rate of 15.2 per 1000 HF events occurring for individuals 65 to 74 years of age.¹ Similarly, an estimated 4.2 million Chinese adults have HF, and the prevalence of CHF for individuals older than 65 years is 1.3% in China.^2,3

Professionals generally recognize that optimal HF management, in addition to pharmacological therapy, involves a coordinated plan of care that includes individualized management, support, promotion of self-care activities, and social support.⁴ Social supports from informal caregivers have been linked to lower hospital readmission rates and better medication adherence.⁵

Informal caregiver is defined as a person who provides needed care on a long-term basis to a recipient, who is most often a relative, friend, or neighbor. This does not include caregivers who provide care on a voluntary basis through an organization (such as a church group) or as a career.⁶ Informal caregivers are important partners in providing long-term care. However, they cannot provide care alone and need guidance, support, and skills to manage care that is often complex.^7-9 Coyne¹⁰ suggested that the healthcare system is ill equipped to facilitate the involvement of family in chronic illness care.

Within the past 10 years, an increasing number of studies focusing on informal caregivers of patients with CHF have been conducted. Researchers have suggested that counseling or education for CHF caregivers is beneficial. However, the type and level of information that has the potential to improve outcomes for patients and their caregivers still need to be established.^11,12 A few studies have evaluated a nursing approach designed to help CHF caregivers. Duhamel et al¹³ suggested that programs designed to benefit caregivers should incorporate their experiences. There are many qualitative approaches that provide a glimpse into the lives of caregivers. On the other hand, individual studies, although informative, do not always contribute significantly to a full understanding the phenomenon of interest.¹⁴

This review aims to synthesize existing qualitative findings related to informal caregivers’ views and experiences of caring for patients with CHF to allow nurses to better meet the needs of caregivers and provide them with guidance.

Methods

This metasynthesis was conducted using the meta-ethnographic method proposed by Thomas and Harden.¹⁵ The authors took the following steps to compare and translate the studies: identified a topic of interest, decided what studies were relevant to the topic, read the studies, and determined the relationship among them. The themes and concepts of 1 study were then compared with the themes and concepts of other studies in the sample. They were then synthesized to reveal overarching metaphors that comprised the final findings of the metasynthesis.

The review question for this report was: Do informal caregivers share any common concerns, perceptions, and themes about their experiences of caring for patients with CHF?

Electronic databases including PubMed, CINAHL (1982–2009), PsycINFO (1967–2009), EMBASE (1980–2009), and the Cochrane Library Database were searched for studies published in English. The following MeSH (medical subject headings) or key words were used for each database: heart failure, cardiac failure, famil*, couples*, marital, or spous*. Inclusion criteria included only those articles directly related to informal caregivers’ experiences of caring for patients with CHF. Exclusion criteria were review or discussion articles or articles that included mixed populations of caregivers of persons with acute HF, cancer, or other chronic disease. Ten studies were identified (Table 1).^16-25 Figure presents the search flow.

TABLE 1.

Summary Table of the Qualitative Studies (N = 10)

Author/Country/ Aim of Study	Sample Size and Origin (Female/Male; Mean Age; Age Range)	Data Collection/ Validation of Findings	Main Findings
Broström et al (2003)16(Sweden) Investigated situations that influence spouses’ support to patients with CHF	Sample of 25 spouses (15/10; NR/42–87 [M], 35–79 [F]) selected from 2 clinics in southern Sweden	Semistructured interviews, triangulation of findings, independent verification	Identified 2 situations: support-stimulating situations (psychosocial adaptation, practical adaptation, receiving help) and support-inhibiting situations (patient’s symptoms, anxiety, sleeping habits, being left to cope alone)
Boyd et al (2004)17 (UK) Investigated how patients and caregivers view health and social care in the last year of life	Purposive sample of 20 patients (9/11; 74/57–92) and their main informal caregivers (NR)	Interviews/independent verification	Identified 6 key issues: managing the physical symptoms, managing the treatments, information about diagnosis/prognosis, frustration and progressive losses, coping strategies, social isolation and caregiver stress, end-of-life care
Aldred et al (2005)18 (UK) Investigated impacts of advanced heart failure on patients and their caregivers	Purposive sample of 10 patients (3/7; 72/60–77) and 10 caregivers from 1 district hospital (6/4, a same-sex couple)	Focused interviews/independent verification	Identified 4 themes: impact of heart failure on everyday life, impact on relationships, professional support, and concerns for the future
Barnes and Gott et al (2006)19a (UK) Investigated views of caregivers	Sample of 16 family caregivers recruited from 5 areas (10/6; <60[3], 61–70 [5]; 70+ [8])	Semistructured interviews, independent verification	Identified 2 themes: change in circumstances and health conditions of family caregivers
Luttik et al (2007)20 (the Netherlands) Investigated the experiences and needs of partners	Convenience sample of 13 partners of patients who had participated in the Dutch COACH trial (10/3; 60/47–80)	Interviews/independent verification, constant comparative analysis used	Identified 6 main themes: changes in life (daily life, joint activities, own life), anxiety, changes in relationship, communication, coping, support (social support, professionals’ support)
Pattenden et al (2007)21 (UK) Investigated how patients with heart failure and their family caregivers cope with daily life	Sample of 36 patients (13/23; 67/36–89) and 20 family caregivers (17/3, one a daughter; NR) from 2 rural district general hospitals and 3 urban hospitals	Semistructured interview/independent verification, participant feedback	Identified 7 main themes: dealing with symptoms, difficulties of multiple medications, the impact of comorbidities, confusion anxiety and depression, adapting life to heart failure, changing roles for caregivers, cultural/religious issues and language difficulties
Brännström et al (2007)22 (Sweden) Investigated meanings of lived experience over time	Sample of 1 patient (70 y) and his wife (70 y) selected from a PAHC unit based at a county hospital	26 Interviews at 3- to 5-mo intervals over a 4.5-y period	Identified 3 themes: integrating the unpredictable illness into life, enduring suffering, and enjoying life
Davidson et al (2007)23 (Australia) Investigated the cultural issue in the experiences of individuals with HF and their families	Sample of 13 family groups from the DISCOVER study (10/3; 66/47–80)	Focus interviews/triangulation of findings	Identified 5 key principles: cultural competence, effective communication and marketing to communities, partnerships and alliances with community groups, consumer participation in decision making and policy, acceptability of services
Clark et al (2008)24 (Denmark) Investigated the complexities of informal caregiving for people with CHF	Convenience sample of 30 informal caregivers (23/7; spouse/partner 24, child 4, sibling 1, neighbor 1)	Semistructured interviews/independent verification	Identified 4 themes: the sharing of caring, the basis of care, formal and informal forms of knowledge about CHF, the activities of informal care (visible caring: medication management, personal needs; invisible caring: monitoring boundaries and risk)
Dinesen et al (2008)25 (Denmark) Investigated the experiences in regard to tele–home-care technology	Sample of 8 patients (2/6; 76/68–84 [F], 67/56–83 [M]) and 6 caregivers (3/3; 68.5/60–80).	Triangulation of data collection, semistructured interviews	Identified 7 themes: privacy is disturbed, responsibility, nervous tension, district nurses instilled, feeling of security, technological malfunctions, causing anxiety

Abbreviations: CHF, chronic heart failure; F, female; M, male; NR, not reported; PAHC, palliative advanced home care.

^aQuality study using a mixed-method design, only data from the qualitative portion of the study were included for synthesis.

FIGURE.

Search flow of studies.

The quality of the 10 articles was assessed using the Critical Appraisal Skills Program criteria for evaluating qualitative research. The findings from these evaluations were not used to inform the inclusion or exclusion of studies, as there are no accepted methods to guide these decisions.¹⁵ Dixon-Woods et al²⁶ purport that various appraisal methods for qualitative studies, including unprompted judgment, quality framework, and Critical Appraisal Skills Program, may not produce greater consistency to evaluate qualitative articles and that even low-quality studies may contribute to the findings.

The first 2 researchers (X.K. and Z.L.) undertook data extraction and analysis using NVivo 8.0 software (QSR International Pty Ltd, Australia). The third researcher (M.T.N.) advised on the search strategy and performed selected data extraction, analysis, and synthesis of data. The data for the synthesis were the authors’ findings verbatim, which were copied into NVivo 8.0 software. Then, the data from the primary research were thematically analyzed. In the next stage of the synthesis, 2 reviewers independently examined the descriptive themes and their associated data. Then, they discussed their findings and developed a set of inductive themes.

Sensitivity analyses showed that findings were robust in the absence of low-quality studies (n = 2), suggesting that they contributed little to the findings. Sensitivity analyses also reflect a robustness of findings regardless of country or clinical setting. This lends weight to the generalizability of the findings and subsequent recommendations.

Sample

The sample for this metasynthesis was composed of 10 research studies. The 10 studies took place in several countries including the United Kingdom (n = 4), Denmark (n = 2), Sweden (n = 2), Australia (n = 1), and the Netherlands (n = 1). Half of the primary studies were multicenter.^16,19-21,23 Sample sizes ranged from 1 to 30 relatives/caregivers. Only 3 of the 10 studies^17,20,21 reported response rates, which were, respectively, 59%, 68%, and 60%. It was not possible to discriminate the data origin for studies that included data from patients and relatives caregivers; however, these studies were included because they were sufficiently oriented and important to the informal caregiver’s experience.^{17,18,21,22,25} Except for 5 children, 1 sibling, and 1 neighbor, the informal caregivers were spouses/partners. The caregivers included 95 women and 39 men; 1 study did not report the number of men and women.¹⁷ Complete details of respective origins, aims, samples, methods, and main findings are shown in Table 1.

Results

The diagnosis of CHF brought a multitude of changes to the lives of patients and informal caregivers. Some caregivers regained a new balance after some time, whereas other caregivers continued to struggle and were still in the process of adapting to the limitations brought about by CHF. Although the experiences recounted by caregivers were highly individual, 5 common themes emerged from the synthesis: sharing of caring, suffering from anxiety, being isolated, enjoying a good relationship, and searching for support. Table 2 illustrates how individual review studies contributed to the development of the themes presented below.

TABLE 2.

Contribution of Individual Review Studies to Final Themes

Study	Sharing of Caring	Suffering From Anxiety	Being Isolated	Enjoying a Good Relationship	Searching for Support
Broström et al (2003)16	—	✔	✔	—	✔
Boyd et al (2004)17	✔	—	✔	—	✔
Aldred et al (2005)18	✔	—	✔	—	✔
Barnes et al (2006)19	—	✔	✔	✔	—
Luttik et al (2007)20	✔	✔	✔	✔	✔
Pattenden et al (2007)21	✔	✔	✔	✔	✔
Brännström et al (2007)22	✔	✔	✔	—	✔
Davidson et al (2007)23	✔	—	—	✔	✔
Clark et al (2008)24	✔	—	—	—	✔
Dinesen et al (2008)25	✔	—	✔	—	✔

Check marks indicate that the final theme was present.

Sharing of Caring

Although many informal caregivers had serious health problems themselves, they played a key supportive role, both emotionally and in terms of doing household tasks and providing physical care.

Informal caregiving was focused on symptom assessment and management, medication consumption, monitoring boundaries, emergency measures, and end-of-life care.²⁴ Because patients needed appropriate medications to delay the progression of CHF, the informal caregivers were an important source of support for medication adherence. Caregivers reported being confronted with new tasks related to medication administration, such as preparing the weekly medication container or calling the pharmacy for prescriptions.

Sometimes, caregivers provided emotional support to the person with HF, such as providing companionship and helping to decrease worries.²²

Home-based care often involved assisting the patients with personal hygiene, dressing and toileting, or household tasks, such as preparing meals. Informal caregivers’ activities were based on daily assessments of perceived patient needs and capabilities. For patients with moderate to severe symptoms (New York Heart Association class III and IV CHF), caregivers regularly undertook caring activities such as dressing and bathing.^18,23,24

Caregivers also had to take over household tasks, such as taking care of the garden, taking out the garbage, and grocery shopping. Sometimes, these tasks were extremely intensive.²⁰ Providing physical care, dealing with medications, monitoring symptoms, and coping with lack of sleep contributed to some caregivers’ complete physical exhaustion.²¹

Suffering From Anxiety

Almost all informal caregivers mentioned anxiety as a common experience, especially immediately after HF was diagnosed. Some caregivers talked about the fear they felt when patients were outside alone, walking, or visiting friends. Some coping measures included using a mobile telephone or simply getting used to the situation. Others still lived with a lot of worries.²⁰

The fear of what the caregivers should do if their spouse/partner suddenly took ill was the source of great anxiety. Some of them felt an increased responsibility in the care of their spouse or family member. For example, some had taken on the responsibility of handling and administering a considerable amount of medication, but this responsibility led to additional worry and concern.¹⁹

Caregivers often did not know how to manage CHF and were clearly upset if any unanticipated events occurred. Acute episodes of HF were particularly stressful.²¹

Another source of anxiety resulted from lying next to the patient at night. Caregivers were aware of their partner’s irregular breathing rhythm and apneas. Caregivers were worried if patients became dyspneic or had long periods of apnea. Because of these worries, caregivers experienced sleep deprivation.²⁰

Being isolated

Many caregivers indicated that losing their social life was a serious lifestyle change they faced when providing care. Reduced social life particularly manifested itself in the case of holidays; both patients and family caregivers expressed regret at being unable to get away from home for vacation or a visit to family. Many participants gave practical reasons for this, including being unable to fly or the lack of health insurance. On the other hand, some did not want to leave the safety of their home environment.¹⁹

The caregivers’ own hobbies or activities were also affected by the patient’s CHF.²⁰ The impact of the condition often isolated caregivers who reported that they had to stay inside the house for most of the time. As a result, some patients and their caregivers had become virtually housebound.²¹

In addition, a few caregivers reported having to give up work or other activities, which often led to isolation and decreased leisure time. Most of the patients and their family caregivers discussed their loss or reduction of social life as a consequence of the onset of the heart condition.²¹ This, in turn, often led to a reduced social support network and an increased reliance on visitors who came to the home.¹⁹

Enjoying a Good Relationship

Another theme that emerged from the data was the impact that the disease had on the relationship between the informal caregiver and the HF patient. Informal caregivers expressed feelings of significant solidarity between themselves and the patient. For example, when the patient ate a low-salt diet, caregivers often ate the same diet. Another example was related to previous joint activities. A caregiver expressed that they used to cycle a lot, but later he did weekly shopping together with his wife in a wheelchair because that was important to his wife.²⁰

Another positive aspect of caregiving was having someone close to discuss and share problems. This appeared to be beneficial to both parties.¹⁹ Despite the difficult issues that confronted caregivers, some expressed the positive effects on their relationship.²⁰

Although most caregivers seemed to have found a way of coping with the situation, they reported difficult issues that put demands on mutual communication. One caregiver discussed the difficulties her husband had in attaining balance between being active and resting.²⁰ The issue of balancing activity and rest is one that brings up conflicting feelings.²⁰

Searching for Support

A strong theme emanating throughout all studies was receiving support from friends, family, health professionals, and formal services to relieve stress related to providing assistance to patients with CHF. A combination of assistance from a variety of sources can ensure that both the caregiver and patients maintain their physical and emotional health.

Family was the most important source of support, especially children who often provided practical and emotional support.²⁰ However, most caregivers stated that they did not talk about their situation with neighbors or friends as they did not feel it was necessary.

Professional support was stated to be inadequate. The lack of coordination between primary and secondary care services was a particular problem. Caregivers stated that they were not adequately informed about CHF because of lack of time on the part of doctors, both in community and hospital settings. Some caregivers reported that they did not want to be too demanding in consultations because they were aware of the doctors’ time constraints.¹⁸

Although caregivers were committed to managing CHF on an ongoing basis, they often had limited clinical or formal knowledge regarding the condition and its management. For example, caregivers reported monitoring patients’ legs for signs of fluid retention. However, they seldom reported understanding the importance of recommended behavioral management strategies (weight monitoring/management, regular physical activity, and alcohol restriction) or the need to monitor patients’ weight, diet, salt, alcohol, or fluid intake. After providing care for patients with CHF for at least 18 months, caregivers still cited the need for information at times of crisis, such as during a rehospitalization. Sometimes, when patients experienced cognitive deficiencies, caregivers needed professional support to cope effectively. Across studies, knowledge gaps were reported to exist in the context of medication and symptom management.^16-18,20

Caregivers expressed appreciation for postdischarge support services. In particular, availability of nursing support was perceived as necessary to meet the different needs of individual patients and caregivers. Home visiting by HF nurse specialist was considered an essential component to effectively address the informational, psychosocial, and spiritual needs of the caregiver.¹⁷

Home care provided to many of the CHF patients involved telehealth technologies. Patient information could be transmitted to the hospitals via a joint Web portal. The staff at the hospital received data such as echocardiogram recordings in an e-mail. In case of emergency (anxiety, complications, etc), the patient could be readmitted to the hospital at any time. However, many caregivers were ill informed, either in terms of how to access such technical aids or in identifying the best placement for them, and thus felt unsafe during the caregiving experience.²⁵

There were noticeable cultural differences in the way some patients and caregivers discussed HF, particularly when they talked about the meaning of their condition and beliefs about the effects of treatment. Some caregivers reported consulting a traditional healer. Some mentioned a belief in Allah and had a more philosophical attitude toward their future. They derived great comfort from their spiritual and religious beliefs, especially when thinking about death. Some patients mentioned that the power of prayer, both their own and those of others, was a major factor in their health.^21,23

Last but not least, particular difficulties arose when financial difficulties were experienced. When 20 family caregivers were interviewed in 5 centers in the United Kingdom, 5 Asian caregivers mentioned financial difficulties related to issues such as expenses incurred traveling to and from hospital appointments, lack of unemployment, or the cost of day-to-day living with a chronic and debilitating illness.²¹

Discussion

A recent statement from the American Heart Association indicates that caregivers should be included in care.²⁷ In addition, researchers have recognized that an understanding of the experiences of caregivers is necessary to identify successful components of education and counseling for CHF patients and their caregivers.²⁸ The themes generated in this metasynthesis illustrate that caregivers, regardless of age, sex, race, and ethnicity, undergo serious changes in their everyday lives. Furthermore, their role seriously impacts their relationship with the recipient of care. Similar to the majority of caregiver studies in chronic disease, the negative experiences are often described in terms of burden, strain, or caregiving demands.²⁹ Meanwhile, some caregivers experience an enhanced sense of meaning, warmth, and pleasure in their relationships as a result of their caregiving roles and responsibilities.

Living with HF is a complex, dynamic process for both patients and their caregivers. Compared with other chronic conditions, HF patients have reported some of the worst physical and social problems. It involves multiple challenges, which include coping with frightening symptoms, complex medications regimens, depression and anxiety, changing roles, and loss of functional abilities.¹² Many caregivers were aware of their stressful situations and realized that they needed the assistance of others to help them cope.

Caregivers can take steps to ensure that their needs are met.²⁴ First, they can maintain their own health by eating a healthy diet, having medical checkups, exercising regularly, and keeping lines of communication open by voicing their needs to family, friends, and community members. Next, they can adapt to their roles as caregivers for HF patients. Caregivers engage in a range of emotional, physical, and advocacy roles for patients with CHF.²⁴ Furthermore, they can join a support group for people with HF and their families. Local hospital, community centers, and newspapers may offer information about group meetings. Discussion forums are also available on the Internet.

The themes generated in this metasynthesis showed that the healthcare system is ill equipped to facilitate the involvement of informal caregivers in HF care. These findings illustrate the need to develop interventions for caregivers to increase their ability to support effective CHF management techniques, improve the quality of their care, reduce costs, and improve patient quality of life.²⁴ Nurses can play an important role in supporting, educating, and caring for patients and their informal caregivers.^30,31 The roles of nurses in successfully managing HF was explored in the study of Riegel et al.³¹

Experience is strongly influenced by culture and ethnicity.²³ This has significant implications for healthcare providers. An important role for nurses is to recognize the needs of caregivers. There are some quantitative tools used to evaluate subjective caregiving experiences, such as Zarit Burden Interview, Caregiver Appraisal Scale, Caregiver Response Scale, Caregiver Reaction Assessment, Caregiving Demands Scale, and Caregiving Burden Scale.³² However, these instruments were developed for patient populations with other chronic diseases, although there may be many commonalities to caregiving experiences of those caring for patients living with CHF and those caring for individuals living with other chronic diseases. In any case, careful and detailed nursing assessments are essential to providing and structuring individualized interventions. For example, Baker et al³³ explored caregiving for patients requiring left ventricular assistance device support and found that caregivers’ self-efficacy in managing everyday demands should be identified and supported.

Developing an effective care plan for caregivers requires a comprehensive physical, social, and psychological assessment, in addition to an appraisal of technical, existential, and cultural needs. For example, although tele–home care devices would improve the outcomes of healthcare, caregivers reported being ill informed about how to access technical aids.²⁵ Thus, the advanced practice nurse or the home healthcare nurse could use role playing as a technique to help the caregiver gain confidence in using telehome care. In addition, broader end-of-life issues were commonly reported.³⁴ Therefore, advance care planning should include a broad set of issues that, in addition to treatment preferences, include the dynamic nature of these preferences and barriers to patient-caregiver communication.¹² Increasingly, the geographical locations of informal caregivers will vary as the emphasis on the management of HF moves from the acute care sector to the community setting. Therefore, nurses and advanced practice nurses should become knowledgeable of available resources and support in their particular area.

Many informal caregivers struggle financially in an effort to provide adequate care to their chronically ill friends or relatives. From a policy perspective, there is growing recognition that caregivers might need economic compensation or a leave of absence from work to provide care. The Federal Family Medical Leave Act of 2009 (available at http://www.dol.gov/laborday/) was spurred in part by the realization of the increased demands of caregiving on family members of an increasingly older population. At a state level, California expanded the Federal Family Medical Leave Act to compensate caregivers for the care that they provide to patients. Caregivers, who need to give up their jobs or decrease their hours to provide informal care to a family member or friend, would benefit from the support of programs that offer financial assistance.

Limitations

There are several potential limitations in this review. This metasynthesis is potentially limited by the fact that it is an interpretation of other researchers’ interpretations. If the original researchers conducted superficial analyses, it may limit the conclusions that can be drawn from their study findings. In this meta-synthesis, only the results of previously published articles were used. The authors did not have access to all qualitative findings of the original studies (including verbatim transcripts and field notes), but had access only to what had been published.

Despite involving multiple database search methods, the review was restricted to studies published in English. Therefore, other studies may exist that were not included in this review. Including such studies in a subsequent review may increase the generalizability across various settings and populations. Furthermore, the studies that included some information on caregivers’ needs were not stringently assessed for the quality of the research designs. Seven of the 10 studies did not report a response rate. It is possible that response rates in these studies were very low, indicating a select and potentially biased sample. Despite these potential limitations, the review has much strength as outlined above.

Clinical and Research Implications

Healthcare professionals need to develop a comprehensive approach that respects and incorporates the centrality of caregivers’ experiences and place them at the center of the caring process. Because this metasynthesis takes into account the findings of several qualitative studies, nurses and other healthcare workers may use the findings as the basis for a framework of intervention strategies directed toward helping caregivers adjust to living and finding new ways to resolve their problems. Support program for CHF caregivers should focus on increasing their understanding of the condition and should enhance their capacity to work with patients around disease management.¹⁷ Nurses should use appropriate instruments to assess caregivers’ needs and provide support to caregivers either as part of a hospital discharge plan, in the community, or in the HF clinic.

Future research should focus on exploring the underlying philosophies of informal caregiving and characteristics of informal caregivers. Further studies are needed to clarify these issues and to examine the role of informal caregivers in the management of CHF in the community. Meanwhile, developing conceptual models are useful in selecting variables that are important to family caregivers. Furthermore, prospective longitudinal studies are needed to test the model with caregivers of patients with HF.

Conclusion

To date, research into the experience of informal caregivers of CHF patients has largely been confined to small, local investigations with a potential for selection bias. Despite these methodological short-comings, the messages emanating from these studies are clear. Caring for a family member with CHF can affect the well-being of those responsible for care, which may ultimately have consequences on the CHF patients’ health. Nurses can better assist informal caregivers by meeting their practical needs. Future initiatives aimed at raising nurse awareness, improving communication, and increasing the incentives to work with caregivers to provide information and skills training may have beneficial effects.

What’s New and Important.

• The diagnosis of chronic heart failure brought a multitude of changes to the lives of informal caregivers.

• This metasynthesis of qualitative studies identified 5 common themes: sharing of caring, suffering from anxiety, being isolated, enjoying a good relationship, and searching for support.

• Health professionals could develop interventions to enhance family support and ensure that caregivers receive needed information while maintaining their own physical and emotional health.