Heart failure (HF) is a clinical syndrome caused by a structural and/or functional cardiac abnormality that is characterized by symptoms of breathlessness, ankle swelling, and fatigue.1 Heart failure affected about 6.5 million Americans 20 years or older in 2014, and the prevalence of HF will increase by 46% from 2012 to 2030.2 In China, the estimated cost of HF was $5.42 billion in 2012, accounting for 5% of total costs of healthcare.3
Because of the lack of formal care institutions and the culture of Chinese Confucianism, most Chinese patients with HF receive home-based care provided by family caregivers.4 A family caregiver is the person who provides most caregiving in the home for ill family members,5 and such caregivers are essential for long-term care.6 Caregivers are responsible not only for symptom and medication management but also for the provision of emotional support and daily activity assistance, such as personal hygiene, dressing, and toileting.6
Caregivers are often not prepared for their caring roles.7 Caring for patients can place a heavy burden on caregivers, often resulting in economic loss and societal isolation for them, which may be associated with psychological distress, such as depression and anxiety.8 Previous studies have shown that 44% to 47% of the caregivers of patients with HF are beset by symptoms of anxiety, and 18% to 57% experience depressive symptoms.9–13 It has been reported that the caregivers of patients with HF struggle with severe depressive symptoms, even more so than the patients.10,14 Compared with noncaregivers, strained caregivers experienced higher levels of depressive symptoms and anxiety (psychological distress), and psychological distress negatively affected caregivers' quality of life.15,16
In a previous study, caregivers with a higher caregiver burden were at a higher risk for greater physical and mental health problems.17 Caregiver burden can be reflected by a caregiver's reaction to or evaluation of caregiving.18 Through a literature review and in-depth interviews, Given et al19 identified a series of caregiver reactions, including how caregiving affected caregivers' health, daily schedule, and finances; how caregiving correlated with caregivers' self-esteem; and the degree to which caregivers perceived support from their family and friends. From these, the Caregiver Reaction Assessment (CRA) was developed to assess caregiver reactions. The CRA measures both negative reactions (lack of family support, financial problems, impact on schedule, and health problems) and positive reactions (caregiver self-esteem) of caregivers of individuals with chronic physical and mental impairments.19
Previous investigators have indicated that negative reactions, such as lack of family support and financial problems, were associated with more stress in informal caregivers of patients with dementia, and impact on schedule and health problems were related to depressive symptoms in caregivers of patients with cancer.20,21 Self-esteem was negatively correlated with depression in caregivers of adult persons with a disability.22 Less is known about caregiver reactions in caregivers of patients with HF and whether caregiver reactions are associated with psychological distress.
The aims of this study are to (1) describe the caregiver reactions to caregiving of HF patient caregivers, (2) examine the prevalence of psychological distress (ie, symptoms of depression and anxiety), and (3) determine the relationship between caregiver reactions and psychological distress after controlling for confounding factors in caregivers of patients with HF.
The Comprehensive Health Seeking and Coping Paradigm23 was adapted in this study to examine the relationship between caregiver reactions and psychological distress. In the conceptual framework, immediate health outcomes (such as social changes) could lead to long-term health outcomes (such as psychological adjustment). In the current study, caregiver reactions were conceptualized as an immediate health outcome, and psychological distress was conceptualized as a long-term health outcome.
Sample and Procedure
This was a secondary analysis of cross-sectional data. Eligible patients and their caregivers were recruited at a university hospital in China between October 2015 and May 2016. The purpose of the original study was to explore the caregiver contribution to self-care of HF.24 This study was permitted by the Medical Ethics Committee of the university. All patients and caregivers provided written informed consent.
Eligible patients (a) were 18 years or older, (b) had a primary diagnosis of HF, and (c) had at least 1 informal caregiver. Patients who had experienced an acute coronary event within the last 3 months, had a life-threatening disease, or had dementia were excluded. All enrolled caregivers were (a) adult caregivers 18 years or older, (b) unpaid caregivers who were designated as primary caregivers by the patients with HF, (c) able to complete the questionnaire in Chinese, and (d) willing to participate in this study. If the caregiver had difficulty understanding the questions, the researchers provided assistance by reading the questions for the participant. Of the 247 eligible dyads of patients with HF and caregivers, 231 caregivers of patients with HF completed the questionnaire for final analyses, and 16 were excluded because of missing data in the main study variables. All data were obtained during a face-to-face interview.
The patients' demographic information, including age, gender, marital status, education, residence, and income, together with the demographic variables of their caregivers, including age, gender, education, marital status, residence, income, relationship to patient, living with patient, and duration of caregiving, were obtained via patient and caregiver interviews. The clinical data of the patients such as duration of HF and New York Heart Association (NYHA) class were obtained from medical records.
Depression and Anxiety
Symptoms of anxiety and depression were assessed using the Chinese version of the Hospital Anxiety and Depression Scale (HADS)25 for the caregivers of patients with HF. The HADS consists of 2 subscales, and each subscale contains 7 items rated on a scale from 0 to 3. To get the total depression and anxiety score, the researchers added the scores of the total items belonging to each subscale. The total scores for HADS-Depression and HADS-Anxiety ranged from 0 to 21. Higher scores reflect a higher level of depressive or anxious symptoms. Consistent with the past literature,26 caregivers who scored 8 or higher were categorized as having symptoms of depression or anxiety. The psychometric properties of the Chinese version of the HADS have been tested in Chinese populations.27 Two previous groups reported that the Cronbach α coefficients were .87 and .764 for HADS-Depression and were .90 and .753 for HADS-Anxiety.28,29 The Cronbach α coefficients in this study were .715 for HADS-Depression and .786 for HADS-Anxiety.
The CRA is a 24-item questionnaire assessing the negative and positive reactions of caregivers.19 The CRA is made up of 5 subscales: financial problems (score range, 3–15), which measures financial stress on caregivers; impact on schedule (range, 5–25), which measures the extent to which caregiving interrupts caregivers' daily activities; health problems (range, 4–20), which measures the extent to which caregiving affects caregivers' physical health; lack of family support (range, 5–25), which measures the extent to which the caregiver perceives a shortage of family support; and self-esteem (range, 7–35), which measures the extent to which caregiving promotes caregivers' self-esteem. Response statements are scored from 1 (strongly disagree) to 5 (strongly agree). A higher score on the self-esteem subscale indicates a more positive experience of caring, whereas higher scores on the other 4 subscales indicate greater negative effects. To compare the 5 subscale scores, a domain score (range, 1–5) was generated by summarizing the item scores and then dividing by the number of items.30 Scoring greater than or equal to 4 in the self-esteem subscale indicates a high positive impact, and scoring greater than or equal to 3 in the other 4 subscales means a high negative impact.31 The CRA has been reported to be a reliable and valid instrument in Chinese population.32 In this study, the Cronbach α coefficient in each subscale was .780 (financial problems), .764 (impact on schedule), .735 (health problems), .744 (lack of family support), and .681 (self-esteem), respectively.
Descriptive statistics included number and percentage, mean and standard deviation (SD), and median (for nonnormally distributed data). Caregivers were grouped into depressive (HADS-Depression ≥ 8) and nondepressive (HADS-Depression < 8) groups, and anxious (HADS-Anxiety ≥ 8) and nonanxious (HADS-Anxiety < 8) groups. Independent t test, χ2 test, Fisher exact test, and Mann-Whitney U test were used to compare the patients' demographic and clinical characteristics, the caregivers' demographic characteristics, and the caregiver reaction scores between the depressive and nondepressive groups and between the anxious and nonanxious groups. Independent variables and confounders with a P value less than .1 in univariate analysis were selected for multivariate analysis. Logistic regression analysis was used to examine the relationship between selected variables and symptoms of depression and anxiety. SPSS 23.0 for Windows was used for data analysis. Two-sided tests were applied with the significance level set to P < .05.
Characteristics of Patients With HF and Caregivers
A total of 231 dyads of patients and their family caregivers were included in this study. The characteristics of the patients and caregivers are presented in Table 1. The mean (SD) age of the patients was 62.69 (10.95) years. More than half of the patients (51.9%) were male, and most of the patients (88.3%) were married. A majority of the patients had a duration of HF less than 1 year (66.2%) and were classified as NYHA class II (61.9%).
The mean (SD) age of caregivers was 48.73 (13.99) years. One hundred twenty-five of the caregivers (54.1%) were female. In regard to the relationship between caregivers and patients, 42.9% of the caregivers were spouses and 45.0% were children of the patients. Most caregivers (55.4%) had a duration of caregiving less than 1 year.
Psychological Distress and Caregiver Reactions
Thirty-five caregivers (15.2%) were categorized as having depressive symptoms, and 59 caregivers (25.5%) were classified as having symptoms of anxiety (Table 2). As Figure has shown, more than half of the caregivers (57.1%) perceived a high impact on schedule, and 39.4% had high financial problems related to caregiving. Only 2 caregivers (0.9%) reported high self-esteem. The median scores were 21 [21, 21] for self-esteem, 8 [6, 10] for financial problems, 15 [13, 15] for impact on schedule, 9 [8, 10] for health problems, and 11 [9, 12] for lack of family support.
Univariate Analysis for Psychological Distress
Univariate analysis showed that caregivers in the depressive group had a higher proportion who more commonly had educational attainment of high school or less (P = .025), monthly family income per person of less than 3000 yuan (approximately US$443; P = .046), and duration of caregiving of a year or more (P = .012) than caregivers in the nondepressive group (Table 2). As for caregiver reactions, caregivers in the depressive group had lower self-esteem scores and higher scores for impact on schedule, financial problems, health problems, and lack of family support (all Ps < .05; Table 2).
Caregivers who were older (P < .001), female (P = .015), living in a rural area (P = .011), with educational attainment of high school or less (P = .005), with monthly family income per person of less than 3000 yuan (P = .003), spouse of the patient (P < .001), and living together with the patient (P = .001) reported more symptoms of anxiety (Table 2). As for caregiver reactions, caregivers in the anxious group had higher scores for impact on schedule, financial problems, health problems, and lack of family support (all Ps < .05) than caregivers in the nonanxious group (Table 2). There was no difference between depressive and nondepressive groups or between anxious and nonanxious groups by patient characteristics (all Ps > .1; Table 3).
Logistic Regression Analyses for Psychological Distress
After adjusting for covariates, we found that impact on schedule (odds ratio [OR], 1.705; P = .001) was related to depressive symptoms in the caregivers. Caregivers who reported a higher impact on schedule were 1.7 times more likely to experience depressive symptoms (Table 4). With regard to the symptoms of anxiety, caregivers who perceived a higher impact on schedule were 1.3 times more likely to experience symptoms of anxiety (OR, 1.306; P = .035). Caregivers who reported greater financial problems were also 1.3 times more likely to experience symptoms of anxiety (OR, 1.273; P = .011). Female caregivers were 2.8 times more likely to report symptoms of anxiety (OR, 2.796; P = .007) (Table 4).
We examined the prevalence of caregiver reactions and psychological distress and determined the association between caregiver reactions and psychological distress in caregivers of patients with HF. We found that the most common caregiver reaction was impact on schedule, followed by financial problems. In this caregivers' sample, 15.2% experienced depressive symptoms, and 25.5% experienced symptoms of anxiety. With regard to caregiver reactions, impact on schedule was associated with depressive symptoms and symptoms of anxiety, whereas financial problems were only related to symptoms of anxiety.
Psychological Distress in Caregivers
Caregiving is a challenging task for caregivers, especially in providing emotional or psychological support.33 With regard to caregivers' psychological distress in other studies, one-fifth of caregivers have reported moderate anxiety or depression,34 which was similar to our findings. However, the prevalence of depressive symptoms in this study was lower than in another previous study.4 A possible reason is that caregivers in that study were younger, and it has been reported that caregivers' age is negatively associated with caregiver depression.12 The prevalence of symptoms of anxiety in the current study was lower than in Makdessi et al's9 study on caregivers of Dutch patients with HF. However, Makdessi et al's study had a higher percentage of patients with NYHA class of III or higher. The caregivers of patients with NYHA classes III and IV were found to have higher anxiety than those of patients with NYHA classes I and II.35 In addition, we found that female caregivers were more likely to experience symptoms of anxiety, which was consistent with Gultekin et al's36 finding that female caregivers had a higher risk of developing anxiety.
Caregiver Reactions Among the Caregivers of Patients With HF
We found that impact on schedule was the most common negative reaction in caregivers of patients with HF. This finding is similar to a published report that impact on schedule was rated the highest score in the 4 negative subscales of the CRA among caregivers of veterans with traumatic brain injury who, like patients with HF, also need long-term care provided by family caregivers.37 Caregivers in our study had a mean (SD) age of 48.73 (13.99) and reported a high prevalence of impact on schedule, which was also found in a previous study. Caregivers in the 35- to 49-year age group experienced a greater impact on schedule than caregivers in the 21- to 34-year age group because the former age group had multiple responsibilities and social roles.38 In a previous study, the average HF caregiving time (25 hours per week) was nearly two-thirds of a 40-hour week stipulated by the Chinese government.34 Thus, it is not surprising that many caregivers reported a large impact on their schedules of caregiving. Caregiving leaves little free time for the caregivers themselves, which may cause an adverse impact on lifestyle and finances.39
A previous study revealed that role changes, schedule disruption, and financial and employment stress were burdensome for caregivers.40 Caregivers in our study also experienced a high rate of financial problems. Starting or increasing caregiving may contribute to working fewer hours and limiting the job choices of caregivers.41 Reduced income from work and the extra cost of caring can result in financial problems for caregivers.42 This burden on caregivers has become an important issue that cannot be ignored.
In our study, few caregivers reported high self-esteem, whereas Cobb et al43 reported that the mean score for self-esteem among the caregivers of patients with cancer was the highest in the 5 subscales of the CRA. The self-esteem subscale consists of positive reactions to caring, such as enjoying caring, feeling privileged to care, and believing caring to be crucial to the caregiver.33 In China, caring for a sick family member is identified as an obligation, which reflects filial piety of Confucian thought,21 so the positive reactions of caregiving may not apply, as there is no choice.
The Relationship Between Caregiver Reactions and Psychological Distress
We found that impact on schedule of caregiving was an important factor related to depressive symptoms and symptoms of anxiety. Previous investigators also found a positive relationship between impact on schedule and psychological distress.20,44 The mechanism of the relationship might be explained as follows. First, providing care interrupts caregivers' life schedules because caregiving increases time demands on caregivers and causes several time limitations in their own lives. Often, caregivers are forced to postpone plans and make life changes.45 Second, caring responsibilities often compete with caregivers' work and/or other family commitments.45 It is difficult for caregivers to feel open to participating in their own personal activities. Therefore, caregivers may become emotionally distressed when they realize the full burden of caregiving.21
In this study, financial problems were related to the symptoms of anxiety in caregivers of patients with HF. Financial problems associated with caregiving include not only the cost of medications but also the cost of transporting patients to the clinic or hospital, and these financial problems were found to be a source of emotional distress in caregivers of patients with stroke or cancer.46,47 Others have reported that there was a significant association between financial problems and poor psychological well-being among caregivers of patients with dementia.20 Moreover, caregivers of patients with lung cancer, who experienced a greater degree of financial stress, had more psychological distress at a 6-month follow-up.48 Our findings add to this body of literature and suggest that healthcare providers should actively discuss financial burdens with caregivers and integrate caregiver burden assessment into intervention programs.
Unexpectedly, we did not find a relationship between health problems and psychological distress. Previous investigators have found that health problems increased the risks of both anxiety and depression in caregivers of older people30 and were positively associated with anxiety and depression of caregivers in a study on cancer patient-family caregiver dyads.49 Furthermore, health problems predicted depression among spousal caregivers of hospice patients.50 Cancer patient caregivers' own medical illnesses were related to their anxiety levels.51 Health problems were related to greater psychological distress at a 3-month follow-up in the spouses of patients with lung cancer.48 However, the relationship between health problems and psychological distress is mixed in HF caregivers, so future studies should more deeply explore this association.
In the current study, we did not find an association between lack of family support and psychological distress. This might be because most of the caregivers in our sample were living together with the patient for whom they were caring. Caregivers who did not live with patients were more likely to perceive lack of family support.33 Previous investigators found that lack of social support was a predictor of depression and anxiety among caregivers of patients with advanced cancer,51 and lack of family support was associated with caregiver distress in spousal caregivers of people with dementia.52 It has also been shown that caregivers with less social support experienced more depressive and anxious symptoms.35 On the contrary, a larger social network, frequent social contact, and the ability to arrange for assistance from friends could decrease the effects of the caregiver burden on depressive symptoms.53,54
This study has several limitations. First, this was a cross-sectional study, and a causal relationship between caregiver reactions and psychological distress cannot be inferred. Longitudinal design studies are needed to infer causality and evaluate the effect of caregiver reactions on psychological distress over time. Second, we did not collect patient information other than sociodemographic and clinical characteristics. Thus, we could not examine patients' and caregivers' interaction effects. Third, patients with HF and their caregivers were enrolled from 1 hospital in China, and more than half of the patients were classified as NYHA class II and had HF for less than 1 year. Thus, generalizability might be limited, and this may have limited our ability to detect relationships between low self-esteem and psychological distress.
In this study, we found a high rate of symptoms of depression and anxiety in Chinese caregivers of patients with HF. Negative impact on schedule was the most commonly reported reaction in our sample, followed by financial problems. Negative caregiver reactions were found to be associated with symptoms of depression and anxiety in caregivers, suggesting that healthcare providers need to attend to caregivers, especially those who find caregiving burdensome due to financial problems and impact on schedule. Hence, healthcare providers should take caregivers' reactions and caregiver characteristics into account when providing guidance for caregivers. In addition, testing interventions for mitigating caregiver burden is warranted.
What’s New and Important
- Impact on schedule was the most common negative reaction to caregiving, followed by financial problems in caregivers of patients with HF.
- Impact on schedule of caregiving was positively related to caregivers' depressive symptoms.
- Impact on schedule and financial problems were positively associated with caregivers' symptoms of anxiety.
- Interventions for mitigating negative reactions to caregiving may reduce psychological distress in caregivers of patients with HF.
The authors thank the hospital nursing department for their support in recruiting participants for this study, the members of the cardiovascular unit of the hospital for their permission to conduct the investigation, and the patients and family caregivers who were willing to participate in this research.
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