Abstract
Introduction/Objective:
This review aimed to summarize articles describing caregiver burden and the relationship between health outcomes as well as describing interventions focusing on this population.
Methods:
The review used the PRISMA statement and Whittemore and Knafl guidelines. The search engines Scopus, PubMed, Ovid (PsycINFO), and CINAHL were searched for articles published in English.
Results:
This review included 30 studies that met the criteria. Physical, psychological, and social factors were associated with HF caregiver burden. HF caregiver interventions included health education, post-discharge home visits, phone calls, counseling, and support groups that demonstrated some potential to reduce the caregivers’ burden.
Discussion:
Healthcare provider team should screen for caregiver burden and promote healthy behaviors, and strategies to improve quality of life. Further studies should include caregivers as care team members and embed social networking in the interventions for reducing HF caregiver burden. The caregivers’ burden could influence the poor outcomes of care, including physical, psychological, societal, and functional dimensions. Future interventions should develop to alleviate HF caregiver burden.
Introduction
Heart failure (HF) is a condition in which the heart cannot supply enough blood to meet the metabolic demands of vital organs.1,2 In the United States, roughly 5.7 million people live with HF and 870 000 new cases are diagnosed annually.3,4 Patients with HF mostly suffer the burden of symptom exacerbation (eg, dyspnea, fatigue, weakness, depression, edema, and fluid overload), which often results in poor health outcomes including decreased quality of life (QOL), increased rehospitalization, and mortality.5,6 The limitations due to HF cause people to be more dependent on others and maintaining cardiac function can be helped with medication management, symptom recognition, and adhering to diet and exercise regimens from others. 7
Caregivers play a significant role in patients with HF as they support symptom management, self-care, and decision-making, particularly in regard to the transition from the hospital to home. 8 A lack of caregiver’s support has been associated with increased rehospitalizations and mortality. 9 While caregiver support has been shown to improve a patient’s health, assuming the role of a surrogate and advocate for patients with HF may cause a burden on the caregiver. Caregiver burden is defined as “The extent to which caregivers perceive that caregiving has had an adverse effect on their emotional, social, financial, physical, and spiritual functioning.” 10 The outcome of caregiver burden is the multidimensional impact of caregiver burden caused by an imbalance between caregivers’ demand and their ability to cope with demands, which is similar across caregivers of chronic conditions such as dementia, cancer, diabetes.11 -14 For instance, caregivers’ reported burdens have consisted of physical, psychological, and lifestyle issues such as insomnia and fatigue, 15 depressive symptoms and anxiety, 9 limited social life, and changed roles. 15
Several literature reviews have examined caregiver burden in patients with HF; however, previous studies focused on caregivers’ individual perceptions of physical and psychological burden.16,17 However, there was limited knowledge of caregivers’ burden in social dimensions such as social interaction. 18 There is a need to improve the understanding of the relationship between caregiver burden and HF caregiver outcomes because the effects of caregiving on the patient and caregiver can have extensive impacts on both individuals’ physical, psychological, and financial factors. 18 This review will determine what factors of HF caregiver’s burden are associated with HF caregiver outcomes and which interventions are the most effective at improving the well-being of HF caregivers to help guide the development of a novel intervention to influence the design of a future clinical study. Therefore, the aims of the current review were to summarize articles describing caregiver burden and the association between health outcomes as well as describing interventions focusing on this population.
Methods
Study Design
This review was conducted using PRISMA guidelines 19 and followed the Whittemore and Knafl 20 methods for a systematic review. The review consisted of 5 steps: (1) problem identification; (2) literature searching; (3) data review and evaluation; (4) data synthesis and analysis; and (5) data presentation.
Search Methods
The current review performed a search for relevant articles in 4 electronic databases: Scopus, PubMed, Ovid (PsycINFO), and CINAHL. The article search used the Medical Subject Headings (MeSH) to create the search keywords: (1) “caregiver*” OR “caregiving” OR “family caregiver*”; (2) “burden”; and (3) “heart failure” OR “HF” OR “HF Patients.” Criteria for articles to be included in the review were: (1) the subjects were caregivers or family caregivers of patients with HF; (2) published in peer-reviewed journals in English; (3) original research articles; and (4) studies published between 2011 and 2020. Our search excluded: (1) focus on only patients with HF (not caregivers); (2) focus outside of HF; (3) outcomes not related to family caregivers or HF caregivers (eg, questionnaire development); (4) non-research articles (eg, review articles, editorials, letter to editor papers); (5) articles with non-empirical data; and (6) unpublished masters and doctoral dissertations that did not go through the peer-review process.
Search Outcome
The search resulted in 1398 articles that were published between 2011 and 2020, which were identified in the initial databases (Figure 1). After duplicates were removed, 778 articles remained. Of these, 499 were excluded based on irrelevant studies; 249 full articles were excluded for other reasons, such as abstract screening, wrong outcomes, review articles, or master’s theses and doctoral dissertations without publication and peer-review. Finally, 30 publications met the criteria and were included in this review.
PRISMA flow chart for literature selection adopted from PRISMA Guidelines. 19
Quality Appraisal
Two researchers (W.S. and T.T.) were independently screened and identified primary studies based on the inclusion criteria. Any disagreements between the appraisals were discussed and resolved among the authors (W.S., T.T., and P.D.). Then 30 studies were evaluated using the Mixed Methods Appraisal Tool (MMAT). 21 The MMAT is beneficial to use as a quality appraisal for quantitative, qualitative, and mixed-method studies. No studies were excluded based on the quality appraisal using the MMAT.
Results
Study Characteristics
The review (Table 1) included 20 cross-sectional studies,4,15,22 -39 5 randomized controlled trials,40-44 2 qualitative studies5,45 1 quasi-experimental study, 46 1 mixed-methods study, 47 and 1 multicenter case-control study. 48 This systematic review included studies conducted in the USA (n = 11), China (n = 7), Italy (n = 3), Turkey (n = 2), Iran (n = 2), Spain (n = 1), Sweden (n = 1), Australia (n = 1), United Kingdom (n = 1), and Taiwan (n = 1). The number of participants ranged from 18 to 530.
Characteristics of the Included Studies.
Abbreviations: CBI, caregiver burden inventory; CG, caregiver; CPs, caregiver partners; CS, cross-sectional study; FACIT–Sp, functional assessment of chronic illness therapy–spiritual well-being scale; FCI, family caregiving inventory; HF, heart failure; HRQOL, health-related quality of life; MCS, multicenter case-control study; MS, mixed-methods study; PHQ-9, the patient health questionnaire 9-it; QE, quasi-experimental study; QOL, quality of life scale; QS, qualitative study; RCT, randomized controlled trial study; WHOQOL-BREF, the world health organization quality of life short form; ZBI, Zarit Burden Inventory.
Sample Characteristics of Caregivers
Over 60% of caregivers were older than 50 years (65.52%) and the majority of the participants were female and married. Most of the studies reported that caregivers had a primary school education or higher (82.35%). The majority of the participants had a monthly income between 237 and 3330 US dollars; 53.33% of the studies indicated that the HF caregivers were unemployed. Most of the studies reported that 52.25% received care from spousal caregivers; the majority of caregivers provided care for more than 1 year (77.78%). Most caregivers (91.67%) spent more than 4 h per day taking care of HF patients.
Caregivers Burden Measurement
The instruments included the direct measurement of caregiver burden and the consequence of caregiver burden measurement. First, caregiver burden was measured by the Zarit Burden Inventory (ZBI) and the Caregiver Burden Inventory (CBI). Second, the consequence of caregiver burden was measured by physical, psychological, and societal health outcomes.
Eleven researcher teams used the ZBI for measuring caregiver strain and stress. The ZBI is a 22-item self-reporting survey consisting of a 5-point Likert-scale, with responses of 0 = never, 1 = rarely, 2 = sometimes, 3 = most often, and 4 = always. The total scores ranged between 0 and 88, with higher scores representing a higher burden of care. Scores of less than 30 were considered mild, scores that ranged between 30 and 60 represented moderate, and scores higher than 60 represented severe burden of care. In addition, researchers also used the CBI in some studies (n = 7) to measure the individual’s levels of strain of caregiver and caregiver burden. This tool is a 24-question self-report questionnaire with 5-point Likert-scale responses. The total scores ranged from 0 to 100, with responses from 0 = minimum burden to 4 = maximum burden, a higher scale and dimension scores represented a higher burden of care.
Several researchers (Table 1) indicated that caregiver burden in HF influenced physical, psychological, social and lifestyle outcomes as a consequence of providing care and support. Physical outcome was measured by the Caregiver Strain Index. 48 Psychological outcomes consisted of depression and psychological health. Depression was measured by the Center for Epidemiological Studies-Depression Scale,28,30 -32,40 and the Patient Health Questionnaire (PHQ-9).22,27,48 Psychological health was evaluated by Caregiver Mental Health Status, 23 Depression Anxiety Stress Scale (DASS), 38 and the Psychosocial Adjustment to Illness Scale (PAIS-SR). 15
Societal outcomes were measured by social support.5,27,31,36 Functional outcomes were measured by the following factors: (1) self-care,5,23,28 (2) QOL: Minnesota Living with Heart Failure questionnaire, 22 the Health-Related QOL questionnaire (HRQOL), 48 (3) self-efficacy,30,31 (4) self-gain, 47 (5) the 36-Item Short Form Survey (SF-36),33,37 (6) activities of daily living, 39 and (7) clinical events. 23
Caregiver Burden
The majority (86.7%) of caregivers of patients with HF (Table 1) perceived a high level of burden. 30 Comorbidity and aging were associated with the severity of caregivers’ burden. For instance, caregivers of HF patients with chronic disease had higher burden scores than caregivers of HF without chronic disease (t = 2.76, P = .007). Age was positively related (r = .257, P = .007) with caregiver burden. 26 Caregivers’ burdens were significantly related to caregivers’ older age, patient’s older age, higher patient education, and lower patient mental QOL (F = 3.590, P < .001). 4 Moreover, the unmet needs at the time of death, such as physical support and community support, were related to the caregiver burden. For example, patients with HF had 0.39 times lower opportunity to access palliative care compared with patients with other chronic conditions (95% CI 0.24-0.64; P < .01). 25
Almost all caregivers (94%) remarked that after the HF diagnosis, HF caregivers experienced physical, psychological, social, and economic burden. 15 Physical burden was incurred when providing support for example reminding patients to take their medications (70%), and helping patients prepare meals (65%), etc. 34 Higher levels of physical burden were significantly related to caregiver older age, fewer medications taken by the patient, and lower patient mental QOL (F = 2.534, P < .001). 5 Psychological burden was identified as one of caregiving’s major problematic aspects, more than half (57%) of HF caregivers asserted that caregiving had negatively affected their health due to stress, anxiety, sleeping problems, and depression. 34 Moreover, emotional burdens were related to hours of caregiving during the day, patient age, patient education, medications taken, and QOL (F = 5.108, P < .001). 5
Social burden also had a large impact on caregivers: most caregivers (63%) noted that caregiving had resulted in changes in some aspects of their lives such as reductions in their social activities, reductions in time for themselves, and reduced time for their other family members. 34 Social burdens were significantly related to the caregivers’ age, hours of caregiving per day, caregivers’ social support, caregivers’ QOL, patients’ education, medications taken, and patients’ mental QOL. 5 On the other hand, one-fourth of caregivers asserted that economic burden, such as a change in their job or a reduction in working hours had resulted in a reduce in income. Almost all caregivers (95%) were not receiving financial support from the healthcare system or social services. 34 Moreover, the following were significantly associated with the caregiver burden: the payment type for treatment (b = −0.431, P < .01), monthly family income (b = −0.133, P < .01), relationship to the patient (b = 0.404, P < .01), self-efficacy (b = −0.314, P < .01), and social support (b = −0.137, P < .01). 30
The Relationship Between Caregivers’ Burden and Their Health Outcomes
Clinical outcomes (rehospitalization or death), higher caregiver strain had a 0.94 times lower risk of clinical event compared to lower caregiver strain (95% CI 0.91-0.97, P < .001). 23 Then, higher mental health status of caregivers had a 0.41 times lower risk of a clinical event compared with lower health status (95% CI 0.20-0.84, P = .01). Next, greater caregiver contributions to HF self-care maintenance had a 0.99 times lower risk of clinical event (95% CI 0.97-0.99, P = .04). However, greater caregiver contributions to patient self-care management had 1.01 times higher risk of clinical event (95% CI 1.00-1.03, P = .04). 23 As regards societal outcomes, caregiver burden impacted finance. For instance, caregiver economic status was a significant predictor of financial strain, caregivers perceived control and social support. 33
Interventions for Heart Failure Caregivers
Five randomized control trials and 1 quasi-experimental study were identified to reduce caregiver burden. Two experimental studies reported that a brochure for caregivers, education (eg, lectures, skills training), peer support group, regular follow-up and consultations, and computer programs significantly improved caregivers’ burden, mental health, and depression in the experimental group.40,41 Ng and Wong 42 found that a home-based palliative HF program (ie, home visits and telephone calls) was statistically significant between groups and at 12 weeks had higher satisfaction (P = .001) and lower caregiver burden (P = .024) than the control group.
Then, Vellone et al 44 indicated the effects of patient and caregiver mutuality on patient self-care confidence (B = 4.144, P = .039) and on caregiver self-care confidence (B = 9.209, P < .001) and the effect of patient mutuality total score on caregiver contributions to self-care management (B = 5.756, P = .014). Their study suggests that the intervention could improve mutuality in HF caregivers and may influence patient self-care and caregiver contribution to self-care. 44 One quasi-experimental design used a telehealth follow-up intervention to implement health education and counseling. The telehealth also indicated that the caregiver burden score was significantly lower in the intervention group than in the control group by the mean score of 23.27 and 32.37, respectively. 46 However, the telephone was not statistically different at the 6-month follow-up. 43 Moreover, there was no significant improvement in caregivers’ physical health at either 3 or 6 months following discharge. 40
Caregiver Perceptions
Two qualitative studies reported that caregiver contributions to self-care maintenance included practices associated with the following: (1) monitoring medication adherence, (2) educating patients about HF symptom monitoring, (3) motivating patients to perform physical activities, and (4) reinforcing dietary restrictions. Researchers also found that caregiver contributions to self-care management included practices associated with (1) symptom recognition and (2) treatment implementation. 5 In addition, caregivers were able to recognize the symptoms of HF exacerbation (eg, breathlessness) but lacked confidence regarding the implementation of treatment (eg, administering an extra diuretic). Therefore, caregiving could enhance relationships, lead to success in negotiating care and healthy behaviors with patients with HF, and prepare caregivers for the future. 47 While one study presented the factors related to caregiver burden including lack of care-related knowledge, physical exhaustion, psychosocial exhaustion, and lack of support. 45
Discussion
Caregivers benefit patients with HF because they provide care, health support, and improve the patients’ QOL.24,49 The current review highlights the importance of acting as a caregiver for HF patients that had a strong effect on physical, psychological, and social factors of the caregivers’ own lives. This review was concurred with the study of Clements et al 50 that most caregivers were female and spouses of patients with HF. Several studies found that caregivers experienced physical, psychological, social, occupational, or economic changes due to providing care.15,30,48,51 Similarly, 1 study reported that spousal caregiver burden was significantly correlated with relationship dissatisfaction, worse patient depression and decreased patient-perceived social support. 52
The findings of several studies showed that HF caregivers spent more than 8 h per day providing care for HF patients.31,32 Some studies reported that caregivers spent 5 to 8 h or more each day when taking care of HF patients.26,38 Caregivers who cared for patients with HF many hours a day had a higher risk of emotional stress, and some caregivers were not psychologically prepared for the caregiver role. This review found that HF caregivers spent more time providing care, which affected the quality of care and incurred negative caregiver outcomes such as poor psychological well-being, poorer health, burden, and lower QOL. 17
Caregivers of patients with chronic illness shoulder a larger responsibility, and this larger caregiver burden altered their physical, psychological, social, and financial functioning. 53 Healthcare providers mostly focus on patients with HF by alleviating HF symptoms and providing a continuing care plan for patients—without assessing the caregivers’ burden. The assessment of burden should include both caregiver situation and burden assessment. First, healthcare providers have to collect the information of caregiver situations consisting of needs, strengths, challenges, and resources for the family caregiver.54,55 Second, healthcare providers also need to perform a comprehensive assessment of caregivers’ burden including physical, psychological, social, and economic burden. 56
The complexity of HF often overwhelms the caregivers who prioritize the care given to the patients. Patients use of hospital services had 1.48 times higher odds of worsened QOL for family caregivers compared with patients who did not require hospital services (95% CI: 1.23-1.79, P < .001). Then, caregivers’ knowledge and experience were the important factors in order to provide effective care because they contributed to caregiver self-gain, which is the strength and confidence to provide care. After that, caregiver contributions to HF self-care maintenance had a 0.99 times lower risk of rehospitalization or death (95% CI 0.97-0.99, P = .04). The contributions in self-care of caregivers represented the relationship of caregivers and patients so the engagement between caregivers and patients could prevent clinically adverse events in patients. 16
Several research teams have developed interventions of health education, post-discharge home visits, phone calls, counseling, and support groups to reduce the caregivers’ burden.40,42 All the interventions were effective in reducing the burden of HF care in caregivers. However, the intervention was effective only for a short period of time. The long-term follow-up found there were no significant differences in caregivers’ burden between the intervention and control group at 24 months after intervention. The interventions were not effective in the long-term follow-up because HF is a chronic condition and patients usually suffer from the exacerbation of HF symptoms several times after HF diagnosis—particularly pain, dyspnea, depression, gastrointestinal distress, and fatigue. 57 The longer caregiving time increased the risk of HF burden in caregivers. Previous interventions tried to solve caregivers’ burdens by providing health education, emotional support, and support groups. Another important missing component would be social support in order to promote the support from social service and healthcare systems. Caregiver burden was negatively associated with social support, for example, increasing social support was associated with decreasing depression.27,28
Limitations
The current review had 6 limitations. First, the sample size in each study varied widely, so the findings of comparison between variables might be imprecise. Second, they did not report some variables in the results or did not clearly include details in the table such as outcomes of care, relationships with the patients, lengths of time providing care; it may develop a biased interpretation of the findings which could impact study validity. Third, the instrument of HF caregiver burden in each tool was heterogeneous and based mostly on self-reporting surveys, which are not the most reliable sources of data. Fourth, there was a low diversity of the HF caregiver demographic characteristics, with all of study participants being female, HF caregivers with spouses, and relationships to patients. As such, the results from the studies were not generalizable to males, other relationships to the caregiver, and other status. Fifth, our study did not use the theory to identify the outcomes. Future research needs to apply the Social Determinant of Health framework with a stronger rationale for the significance of the topic, in particular, it would be stronger if it provided specific information about the domains of caregiver burden and how it is important to understand interpersonal relationships and social interaction components of caregiver burden. Finally, the current review included only English language publications, which might have missed out on pertinent studies performed in other languages and other areas. Future research should be included in all types of studies in other languages; it might change the results that could be improved HF caregivers.
Conclusion
The current findings confirm that HF caregiver burden is significantly related to physical, psychological, and social factors. The current review also confirms that intervention studies can improve mutuality in HF caregivers and influence patient self-care and caregiver contributions to self-care. Despite the early state of the evidence in this field, it seems that effective management of HF caregivers will play a significant role in the future in reducing of caregiver burden for the patients with HF and their caregivers.
Footnotes
Author’s Contribution
Two reviewers (W.S., T.T.) screened the titles and abstracts of each article. Disagreements were resolved by discussion with the third reviewer (P.D.). The data were extracted by W.S. and cross-checked by T.T. including the discussion between both authors to reach a consensus where differences arose. The synthesis was carried out by W.S. and reviewed by T.T. All the authors contributed to the interpretation of the final findings and approved the final version of the article.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
Ethical approval
No ethical approval was needed.
Informed consent
No inform consent was needed.
