Factors Associated With Caregiving Appraisal by Caregivers of Patients With Heart Failure　― A Cross-Sectional Study ―

Abstract

Background: Caregiver support is essential for patients with heart failure to receive continued care at home.

Methods and Results: This cross-sectional study of 60 heart failure patients and their primary caregivers (consent rate 62.5%) examined the relationship between the caregivers’ assessment of caregiving using the Caregiver Reaction Assessment Japanese version and the patients’ and caregivers’ sociodemographic factors, the patients’ physical condition, the caregiving activities, and health-related quality of life assessed using Short Form-8. The results indicated that Short Form-8 scores were inversely associated with positive appraisal of caregiving (β=−0.33; P=0.01). The impact on the schedule of daily living was associated with caregivers’ mental health (β=–0.28; P=0.04) and the frequency of practical support related to medical treatment (β=0.25; P=0.05). There were associations between the following: impact on health (2.3±0.9) and caregiver employment (β=–0.27; P=0.03); lack of family support (2.2±0.8) and hours of care per day (β=0.25; P=0.05); and impact on finances (2.3±1.2) and functional health literacy (β=0.25; P=0.05).

Conclusions: Evaluating caregiving appraisal and related factors among caregivers of patients with heart failure may lead to effective support for caregivers.

Patients with heart failure (HF) who live at home are required to perform various self-care actions to prevent exacerbation of symptoms, including symptom monitoring, salt and fluid restriction, and medication adherence.¹ However, many patients with HF are older and have numerous medical, physical, and psychosocial problems. These problems often make it difficult for them to adequately perform the necessary self-care tasks on their own. The roles of caregivers for these patients include assisting patients with fluid and salt restriction and the maintenance of HF treatment, in addition to helping patients with the necessary activities of daily living. These caregivers may also monitor HF symptoms and respond to worsening symptoms, assist with medication and transportation to/from outpatient clinics, motivate and psychologically support the patient to continue treatment, and communicate and consult with medical and social service personnel.² Caregivers may also offer the patient physical and emotional support during long periods of repeated HF exacerbations and remissions.^3–5 Importantly, caregivers may experience physical and psychosocial fatigue, a sense of caregiver burden, and a decline in quality of life, especially during the long periods between HF exacerbations and remissions.^6–8

Caregiving evaluations have both positive and negative aspects, such as assessments of excessive caregiving burden. Improving negative caregiving evaluations and enhancing positive evaluations may be effective for reducing caregiving burden.^9–11 Negative caregiving evaluations include the physical burden of constantly supporting the daily life of HF patients and the psychological burden of constant worry about the patient. The negative evaluation of caregiving is the psychological burden of worrying about the patient, as well as the physical burden of constantly supporting the daily life of the HF patient, and it has been reported that caring for a patient with HF affects the caregiver’s own lifestyle.¹² However, a previous study examining the lived experiences of caregivers of HF patients showed that caregivers perceived ‘love and affection for the patient’ through caring for the patient, which improved their psychological state.¹³ Furthermore, caregivers’ positive evaluations of HF patients included ‘amount of social support’, ‘quality (of patient-caregiver) relationship’, and ‘more personalized’. Negative evaluations of caregiving provide important information for reducing caregiver burden and providing physical and emotional support, while positive evaluations increase caregivers’ self-worth and help them develop a more intimate relationship with their patients. Therefore, understanding the reality of caregivers’ positive and negative evaluations of caregiving and the factors that influence them may also help healthcare providers deliver more effective support to caregivers.⁹ The purpose of the present study was to clarify the nature of care for patients with HF and the actual conditions and factors associated with caregivers’ positive and negative appraisals of their caregiving.

Methods

Study Design and Participants

This multicenter cross-sectional study was conducted from February 2019 to March 2021. The study was conducted at medical institutions in the Kanto area that provide treatment for HF patients and were willing to cooperate with the study. The study population comprised patients with HF aged ≥65 years who had a history of hospitalization for HF exacerbations, and their primary caregivers. When explaining the study to patients who were potential research participants, we asked who their primary caregivers were, and identified primary caregivers who were potential research participants. Exclusion criteria were facility-based patients and patients or caregivers with obvious cognitive decline or psychiatric illness who were unable to understand the study description or complete the questionnaires.

Ethical Considerations and Data Collection

This study was conducted after obtaining approval from the Research Ethics Review Committee of the Kitasato University School of Nursing (approval no. 2018-16-2). We also obtained approval from the institutional ethics review committees of the collaborating institutions. In addition, all research participants received an explanation and consent document that was approved by the reviewing organizations at each collaborating institution. Comprehensive written and oral explanations were provided to all research participants, after which written consent to participate was obtained from those that were willing to participate in the study.

This study involved a survey of patients’ medical records and a self-administered questionnaire completed by patients and caregivers. The primary endpoint was caregiver assessment, and potentially relevant factors were selected from the results of a scoping review of caregiver assessment of HF patients, including clinical factors such as severity of HF, degree of cardiac function, presence of complications, physical and emotional vulnerability of patient and/or caregiver, patient–caregiver relationship, and availability of social support.¹⁴ Specific items included the following: patients’ age, sex, level of care required, severity of HF (New York Heart Association Classification of Heart Function [NYHA] class), left ventricular ejection fraction (LVEF), comorbidities (Charlson Comorbidity Index),¹⁵ and number of hospitalizations for HF, which were collected from medical records. The Charlson Comorbidity Index was translated into Japanese by the researcher from the original English version. In addition, patients’ functional disability and depression in daily life were evaluated, along with caregivers’ demographic characteristics, ratings of caregiving, content of caregiving, anxiety and depression, quality of the relationship with the patient, sense of control, health literacy, and health-related quality of life. These aspects were collected with a self-administered questionnaire survey. Missing questionnaire data were collected by the researchers via telephone contact with the relevant participant but were excluded from the analysis if the participant refused to answer.

Measurements for Patients With HF

Impairment of Daily Functioning Because of HF This study used the Japanese version of the Minnesota Living with Heart Failure Questionnaire, which is a disease-specific 21-item measure of daily functioning.¹⁶ Responses are on a Likert scale with a total score ranging from 0 to 105. Higher scores indicate that HF impaired daily life.

Depressive Symptoms The Patient Health Questionnaire-9 (PHQ-9) was used to evaluate depression.¹⁷ The total score (0–27 points) was calculated based on specific symptom levels: 0–4 points=none; 5–9 points=minor to mild; 10–14 points=moderate; 15–19 points=moderate to severe; and 20–27 points=severe depression.

Measurements for Caregivers

Demographic Characteristics The information collected from caregivers included: age, sex, relationship to the patient, employment status, household income, living together (with the patient), presence of health problems, duration of caregiving, hours of care provided per day, presence of support people, and social resources used by the patient.

Caregiving Appraisal The Caregiver Reaction Assessment Japanese version (CRA-J) was used to examine caregivers’ appraisal of caregiving.¹⁸ The positive appraisal comprised 1 subscale ‘Caregiver’s self-esteem’ and the negative appraisal had 4 items: ‘impact on schedule (of daily living)’; ‘impact on health’; ‘impact on finances’; and ‘lack of family support’. Each subscale score is the mean of the scores of the items included in the subscale and ranges from 1 to 5. For the positive appraisal, a lower score indicated a more positive perception of care.

Details of Care for Patients With HF The Japanese version of the Dutch Objective Burden Inventory (DOBI) was used to evaluate details of care. This scale comprises 50 items on 4 subscales: personal care; motivational support; emotional support; and practical support. For each question, the caregiver was asked to rate both the frequency and burden of each caregiving task. If the caregiver did not perform a particular task, a response for the burden of that item was not required. Each item is rated from 1 to 3, and subscale scores range from 1 to 3 (based on the average score for the items included in that subscale).^19,20 Frequency responses represented objective burden, and burden scores represented subjective burden. Higher scores for both burden types indicated higher levels of burden experienced by the caregiver.

Anxiety and Depression The Japanese version of the Hospital Anxiety and Depression Scale (HADS) was used to evaluate patients’ anxiety and depression. The HADS comprises 14 items on 2 subscales (‘anxiety’ and ‘depression’), with each item scored from 0 to 3. Subscale scores are calculated by summing the 7 anxiety items and the 7 depression items; scores of 0–7 are classified as no anxiety/depression, scores of 8–10 as false positives, and scores of ≥11 as possible anxiety/depression.²¹

Quality of the Relationship Between Patient and Caregiver The Japanese version of the Family Relationships Index was used to assess the quality of the caregiver-patient relationship. This instrument has 3 subscales that cover relationship dimensions (a subconcept of the Family Environmental Scale). It comprises a total of 12 items, with dichotomous (‘yes’ or ‘no’) responses. Scores range from 0 to 12, with higher scores indicating better relationships.^22,23

Perceived Control The Japanese version of the Control Attitudes Scale (CAS-R) was used to evaluate caregivers’ perceived control. The CAS-R measures the sense of control, or belief that cardiac patients need to cope with negative events. It comprises 8 questions that are rated on a 5-point scale.²⁴

Health Literacy Health literacy was assessed using the Heart Failure Specific Health Literacy Scale. This instrument has 3 subscales: functional health literacy; communicative health literacy; and critical health literacy (total of 12 items). Responses are on a scale from ‘not at all’=1 to ‘often’=4. Scores are additive and range from 4 to 12 points for each subscale, giving a total score of 12–48 points; higher scores indicate higher health literacy.²⁵

Health-Related Quality of Life Health-related quality of life was assessed using the Japanese version of the 8-item Short Form-8 Health Survey Standard Version (SF-8), which has 8 domains (1 item each): physical functioning; role physical (role limitations caused by physical problems); bodily pain; general health; vitality; social functioning; role emotional (role limitations caused by emotional problems); and mental health. Responses are scored based on the national standard values, meaning the scores can be interpreted in comparison with these standard values. Two summary scores (Physical Component Summary [PCS] and Mental Component Summary [MCS]) can be calculated based on the 8 subscales.²⁶

Statistical Analyses

The dependent variables in this study were caregivers’ positive and negative evaluations of caregiving as assessed using the CRA-J, and the independent variables were as follows: the patient factors were age, gender, use of social resources, certification of needed long-term care, nursing care level, NYHA functional class, LVEF, and Charlson Comorbidity Index score; the caregiver factors were age, gender, employment status, presence or absence of chronic disease, living with the patient, relationship with the patient, presence or absence of a supporter, duration of care, daily caregiving time, health literacy, anxiety, depression, perceived control, quality of patient–caregiver relationship, and health-related quality of life. Data obtained from the medical records and questionnaire survey were evaluated using descriptive statistics, with categorical variables calculated as percentages, and continuous variables as means and standard deviations. A correlation coefficient matrix table was created to examine relationships among independent variables, using Pearson’s product-rate correlation analysis. Items showing high correlation coefficients (|r|>0.9) were identified. To determine factors influencing caregivers’ positive and negative evaluations of caregiving, a single regression analysis was conducted with the items from the 5 CRA-J subscales as the dependent variable and all other variables as independent variables. Multivariate regression analyses were then conducted using the forced entry method. Independent variables with a significance level <0.05 were included in the single regression analysis. To confirm multicollinearity, we calculated the variance inflation factor (VIF) and checked for multicollinearity.

Patients or caregivers who wanted to withdraw their consent to participate in this study during the course of the study were excluded from the analysis. All analyses were performed using SPSS ver. 23.0. for Windows. Statistical significance was set at a P value of <0.05 (2-tailed).

Results

Participant Characteristics

The study was conducted at 4 hospitals: Kameda Medical Center; Kanagawa Cardiovascular and Respiratory Center; Kanazawa Cardiovascular Hospital; and Minamino Cardiovascular Hospital. These hospitals were either specialized cardiology hospitals with 20–184 beds or general hospitals with 47–77 beds in the cardiology ward. Of the 271 potential patient participants who were aged ≥65 years with a history of hospitalization for HF exacerbation and had a caregiver, 96 patient-caregiver pairs were considered eligible to participate, after excluding 175 pairs based on the exclusion criteria (e.g., cognitive decline). Of these 96 pairs, 35 pairs refused to participate in this study, and consent to participate was obtained from 61 pairs. In total, 60 (62.5%) pairs were included in the analyses, after excluding 1 pair who withdrew consent during the study.

Table 1 presents participants’ characteristics. The mean age of patients was 79.8±7.8 years, 29 (48%) patients were women, and the most common NYHA classes were II and III (n=27 [45%] in both). The mean LVEF was 45.9±17.6%, 22% of the patients were certified as requiring nursing care, and 62% required support. The average age of the eligible caregivers was 62.2±10.4 years, and 72% were women. The most common relationship with the patient was a child (45%), and 43 (38%) caregivers were spouses. Additionally, 47 (78%) caregivers lived with the patient, 36 (60%) caregivers had a job, and 40 (67%) caregivers had a chronic disease themselves. Caregivers had supported their patients for an average of 4 years and 10 months (ranging from 1 month to 40 years; median 24 months). The average time care was provided per day was 2±3 h (range 0.5–24 h).

Table 1.

Characteristics of Participating Patients With HF and Their Caregivers

Characteristic	Patients with HF (n=60)	Caregivers (n=60)
Age	79.8±7.8	62.2±10.4
Female sex	29 (48)	43 (72)
Employed		36 (60)
Having a chronic disease		40 (67)
Living with patient		47 (78)
Relationship to patient
Spouse		23 (38)
Adult child		27 (45)
Brothers and sisters		1 (2)
Other relative		9 (15)
Having a supporter		38 (63)
Duration of caregiving (months)		24 (1–480)
Caregiving hours per day (h)		2±3
Use of social resources	17 (28)
Certification of needing long-term care
Yes	13 (22)
No	47 (78)
Nursing care level (n=13)
Support required 1	4 (31)
Support required 2	4 (31)
Nursing care level 1	3 (23)
Nursing care level 2	1 (8)
Nursing care level 3	1 (8)
NYHA functional class
I	3 (5)
II	27 (45)
III	27 (45)
IV	3 (5)
Left ventricular ejection fraction	45.9±17.6
Charlson Comorbidity Index
1–2 (medium)	32 (53)
3–4 (high)	22 (37)
≥5 (very high)	6 (10)
No. HF hospitalizations	1.8±1.8
MLHFQ score	42.4±21.7
PHQ-2
No	35 (58.3)
Yes (false positive)	25 (41.7)
PHQ-9
No (0–4 points)	2 (8)
Minor to mild (5–9 points)	11 (44)
Moderate (10–14 points)	6 (24)
Moderate to severe (15–19 points)	4 (16)
Severe (20–27 points)	2 (8)
HFSHLS score
Total		28.4±5.3
Functional health literacy		8.3±2.6
Communicative health literacy		11.5±2.3
Critical health literacy		8.6±3.1
HADS-Anxiety
No (0–7 points)		37 (61.7)
False positive (8–10 points)		13 (21.7)
Yes (11–21 points)		10 (16.7)
Total score		6.6±3.8
HADS-Depression
No (0–7 points)		31 (51.7)
False positive (8–10 points)		19 (31.7)
Yes (11–21 points)		10 (16.7)
Total score		7.4±3.5
CAS-R score		22.0±4.5
FRI score		7.1±2.2
SF-8 score
Physical Component Summary (PCS)		46.7±8.4
Mental Component Summary (MCS)		47.8±6.0

Data are presented as n (%), median (range), or mean±SD. Because of rounding, not all percentages total 100. CAS-R, Control Attitudes Scale; FRI, Family Relationships Index; HADS, Hospital Anxiety and Depression Scale; HF, heart failure; HFSHLS, Heart Failure Specific Health Literacy Scale; MLHFQ, Minnesota Living with Heart Failure Questionnaire; NYHA, New York Heart Association; PHQ, Patient Health Questionnaire; SD, standard deviation; SF-8, 8-Item Short-Form Health Survey.

Descriptive Statistics for the Studied Variables

The mean score for the Minnesota Living with Heart Failure Questionnaire was 42.4±21.7 (range 8–90; median 42.5; Table 1). Of the 25 (42%) patients who responded ‘yes’ (false positive) on the PHQ-2 (which assesses depression), 11 (44%) had minor to mild depression. Caregivers’ mean PCS and MCS scores were 46.7±8.4 and 47.8±6.0, respectively.

Evaluation of the content of care provided as assessed by the DOBI (Table 2), the mean scores for objective burden were 1.2±0.2 for assistance with personal care, 1.4±0.4 for motivational support in recuperation, 1.9±0.5 for emotional support, and 1.7±0.5 for practical support related to medical treatment. The mean scores for subjective burden on these subscales were 1.0±0.1, 1.1±0.2, 1.2±0.3, and 1.1±0.2, respectively.

Table 2.

Scores for Objective and Subjective Burden as Assessed Using the DOBI

Subscale†	Objective burden (’frequency’; mean±SD)	Subjective burden (’burden’; mean±SD)
Personal care	1.2±0.2	1.0±0.1
Motivational support	1.4±0.4	1.1±0.2
Emotional support	1.9±0.5	1.2±0.3
Practical support	1.7±0.5	1.1±0.2

^†Score range for each subscale is ’1–3’. DOBI, Dutch Objective Burden Inventory; SD, standard deviation.

Examination of caregivers’ appraisal of caregiving as assessed using the CRA-J (Table 3) showed the mean score for positive appraisal of caregiving was 2.9±0.7. The mean scores for negative appraisal were 2.4±1.0 for impact on schedule, 2.3±1.2 for impact on finances, 2.3±0.9 for impact on health, and 2.2±0.8 for lack of support from family.

Table 3.

Mean Scores for Positive and Negative Appraisal of Caregiving as Assessed Using the CRA-J

Subscale†	Mean±SD
Positive appraisal
Caregiver’s esteem	2.9±0.7
Negative appraisal
Impact on schedule	2.4±1.0
Impact on finances	2.3±1.2
Impact on health	2.3±0.9
Lack of family support	2.2±0.8

^†Mean score range for each subscale is ’1–5’. For the positive aspects, a lower score indicates a better perception of care. For the negative aspects, a higher score indicates a greater impact. CRA-J, Caregiver Reaction Assessment; SD, standard deviation.

Factors Influencing Caregivers’ Appraisal

The results of the multivariate regression analyses of factors influencing caregivers’ appraisal of caregiving are shown in Table 4. Caregivers’ health-related quality of life (PCS score) was significantly associated with the positive appraisal item ‘Caregiver’s self-esteem’ (standard partial regression coefficient [β]=−0.33; 95% confidence interval [CI] −0.05, −0.01; P=0.01).

Table 4.

Single and Multivariate Regression Analyses for Caregiving Appraisal

	Single regression analysis			Multivariate regression analyses
	β	95% CI	P value	β	95% CI	P value	VIF
Positive appraisal: caregiver’s self-esteem
Caregiving hours per day	−0.23	−0.11, 0.01	0.08	−0.10	−0.08, 0.04	0.47	1.302
Supporter	0.24	−0.03, 0.76	0.07	0.15	−0.16, 0.61	0.24	1.092
HRQOL: Physical component summary	−0.32	−0.05, −0.01	0.01	−0.33	−0.05, −0.01	0.01	1.089
Objective burden (frequency) personal care	−0.23	−1.60, 0.10	0.08	−0.19	−1.59, 0.30	0.18	1.411
Objective burden (frequency) emotional support	−0.24	−0.76, 0.03	0.07	−0.14	−0.61, 0.18	0.28	1.135
						R2=0.244, Adj. R2=0.174
Negative appraisal: impact on schedule
Duration of caregiving	−0.26	−0.01, 0.00	0.05	−0.08	0.00, 0.00	0.50	1.200
Anxiety	0.29	0.07, 1.08	0.03	0.10	−0.29, 0.68	0.43	1.312
HRQOL: mental component summary	−0.45	−0.11, −0.04	0.00	−0.28	−0.09, 0.00	0.04	1.456
Objective burden (frequency) personal care	0.31	0.28, 2.47	0.01	0.08	−0.74, 1.44	0.52	1.297
Objective burden (frequency) practical support	0.42	0.39, 1.37	0.00	0.25	0.00, 1.03	0.05	1.244
Subjective burden (burden) emotional support	0.32	0.23, 1.77	0.01	0.15	−0.31, 1.23	0.23	1.251
						R2=0.346, Adj. R2=0.272
Negative appraisal: lack of family support
Caregiving hours per day	0.37	0.03, 0.15	0.00	0.25	0.00, 0.12	0.05	1.146
Supporter	−0.27	−0.88, −0.03	0.04	−0.19	−0.72, 0.09	0.12	1.076
HRQOL: mental component summary	−0.26	−0.07, 0.00	0.04	−0.18	−0.06, 0.01	0.16	1.149
Objective burden (frequency) motivational support	0.33	0.18, 1.23	0.01	0.16	−0.33, 1.02	0.31	1.869
Subjective burden (burden) motivational support	0.30	0.17, 1.83	0.02	0.08	−0.83, 1.35	0.64	2.010
						R2=0.267, Adj. R2=0.199
Negative appraisal: impact on health
Employed (caregivers)	−0.43	−1.28, −0.37	0.00	−0.27	−0.98, −0.04	0.03	1.433
Chronic disease (caregivers)	−0.22	−0.06, 0.01	0.01	0.09	−0.38, 0.73	0.53	1.759
Living with patient	0.28	0.07, 1.22	0.03	0.14	−0.26, 0.89	0.27	1.584
Functional health literacy	0.26	0.00, 0.19	0.04	0.21	−0.01, 0.16	0.08	1.250
Depression	0.36	0.21, 1.13	0.01	0.13	−0.20, 0.70	0.27	1.520
HRQOL: physical component summary	−0.37	−0.07, −0.01	0.00	−0.18	−0.05, 0.01	0.15	1.618
HRQOL: mental component summary	−0.35	−0.09, −0.02	0.01	−0.12	−0.06, 0.02	0.34	1.710
Objective burden (frequency) motivational support	0.32	0.17, 1.40	0.01	0.20	−0.27, 1.24	0.20	2.251
Objective burden (frequency) practical support	0.35	0.21, 1.18	0.01	0.06	−0.42, 0.66	0.65	1.749
Subjective burden (burden) personal care	0.27	0.21, 5.78	0.04	0.10	−1.61, 3.90	0.41	1.458
Subjective burden (burden) motivational support	0.31	0.21, 2.13	0.02	−0.25	−2.43, 0.52	0.20	3.440
Subjective burden (burden) emotional support	0.35	0.30, 1.77	0.01	0.09	−0.55, 1.07	0.53	1.781
Subjective burden (burden) practical support	0.34	0.34, 2.25	0.01	0.18	−0.42, 1.81	0.21	1.973
						R2=0.532, Adj. R2=0.399
Negative appraisal: impact on finances
Living with patient	0.26	0.02, 1.45	0.04	0.17	−0.28, 1.25	0.21	1.357
Functional health literacy	0.29	0.02, 0.24	0.03	0.25	0.00, 0.23	0.05	1.180
HRQOL: mental component summary	−0.32	−0.11, −0.02	0.01	−0.07	−0.07, 0.04	0.06	1.469
Objective burden (frequency) motivational support	0.27	0.05, 1.59	0.04	0.13	−0.61, 1.41	0.43	2.049
Objective burden (frequency) practical support	0.35	0.26, 1.47	0.01	0.13	−0.37, 0.99	0.37	1.428
Subjective burden (burden) motivational support	0.31	0.31, 2.68	0.02	0.00	−1.78, 1.79	1.00	2.624
Subjective burden (burden) practical support	0.36	0.56, 2.91	0.00	0.23	−0.29, 2.48	0.12	1.553
						R2=0.306, Adj. R2=0.213

Adj. R², adjusted coefficient of determination; β, standardized partial regression coefficient; CI, confidence interval; HRQOL, health-related quality of life; R², coefficient of determination; VIF, variance inflation factor. Significance level, P<0.05.

Negative appraisals for ‘impact on schedule’ showed significant associations with caregivers’ MCS score (β=−0.28; 95% CI −0.09, 0.00; P=0.04) and frequency of practical support for patients with HF (β=0.25; 95% CI 0.00, 1.03; P=0.05). In addition, a longer daily caregiving time (β=0.25; 95% CI 0.00, 0.12; P=0.05) was significantly associated with higher perceived lack of support from family. Caregiver employment (β=−0.27; 95% CI −0.98, −0.04; P=0.03) was significantly associated with impact on health of caregivers. Additionally, caregivers’ functional health literacy (β=0.25; 95% CI 0.00, 0.23; P=0.05) was significantly associated with the financial impact of caregiving. No multicollinearity was observed in these analyses.

Discussion

In the present study, we evaluated the positive and negative appraisal of caregiving by caregivers of HF patients. Positive appraisal was related to physical health-related quality of life, whereas some negative appraisal subscales were related to employment status and health literacy. To the best of our knowledge, this study is the first to focus on caregivers’ ratings of caregiving for HF patients in Japan. These results may be useful for informing the support provided to caregivers of HF patients.

Current Status of Caregiving for Patients With HF in Japan

Both the PCS and MCS scores of caregivers tended to be lower compared with the national standard values for men and women aged 60–69 years (age-specific standard PCS=49.2 points, MCS=51.1 points).²⁶ The results of this study indicated that caregivers perceived emotional support as the most frequent caregiving task, which had a high subjective burden. A comparison of the mean score for the objective burden (i.e., ‘frequency’) of caregiving tasks assessed using DOBI with the results of a previous study indicated that only psychological support showed lower values in the present study.²⁷ The lower mean score for emotional support in our study may be attributable to the fact that 3 questionnaire items (‘provide comfort’, ‘talk to’, and ‘show understanding’) may have been viewed by our caregivers as normal communication in the home, so they may not have perceived psychological support as caregiving.

The mean scores for caregivers’ subjective burden in this study tended to be low for all items (mean DOBI score range 1–3). Caregiver burden among caregivers of patients with HF has previously been associated with caregiver depression;²⁸ this was consistent with the mean score of 7.4 points for depression among caregivers in this study, which was below the cut-off value of 8 points. In addition, 62% of the patients that were certified as needing care support required. This relatively low requirement for physical care may have also contributed to the low subjective burden results.

Positive Appraisal of Caregiving and Its Associated Factors in Caregivers of Patients With HF

The positive appraisals of caregiving scores of caregivers of HF patients in this study were comparable with those reported in a Japanese study of caregivers of schizophrenia, depression, dementia, and stroke patients.²⁹ The positive appraisal of caregiving by caregivers is an important aspect of caregiver support for all illnesses, and there is a need to identify factors related to positive appraisal and to build support to improve it.

The present study suggests that the better the caregiver’s physical health, the better their perception of caregiving may be. Prior research has shown that caregivers supporting (or performing on behalf of the patient) the complex treatment and self-care needed for patients with HF required large amounts of time and energy.³⁰ Therefore, if caregivers are not physically healthy, it may be difficult for them to perform care tasks, which may limit their ability to recognize positive emotions such as ‘pride’ and ‘enjoyment’ through caregiving. Therefore, it may be possible to increase caregivers’ positive evaluations of caregiving by assessing their physical health, and offering support that considers the caregiver’s health status (e.g., suggesting the use of available social resources).

Negative Appraisal of Caregiving and Its Associated Factors for Caregivers of Patients With HF

Among the negative appraisal items, ‘impact on schedule’ had the highest rating. This finding is consistent with the results of a previous study involving family caregivers of patients with HF in the United States (present study 2.8 points; previous study 2.8 points).²⁷ Furthermore, Strömberg et al. found that caregiving limited the caregiver’s daily life, and that social isolation and loneliness, and a lack of social and professional support, were common.⁷ Therefore, caregivers who provide care less frequently should objectively assess whether supporting the patient interfered with their own daily life and consider the support they need. This may help to reduce the burden of caregiving.

The present study showed that poor mental health and the frequency of caregivers providing general daily support were associated with caregivers’ daily lives. Caregivers in this study tended to provide high levels of psychological support to the patient as well as support for general daily life related to the patient’s care. In addition to fatigue from assisting with self-care (e.g., medication management, and salt and fluid restrictions), caregivers of patients with HF may experience anxiety about possible exacerbations of symptoms and fear of the patient’s sudden death.^6–8 Therefore, providing frequent assistance with the care for patients with HF may help to support both the caregivers’ mental health and their daily activities related to the patient’s care.

This study showed that caregivers who spent more hours per day caring for a patient may be more aware of a lack of support from family members than those who reported fewer caregiving hours. In a previous study that examined the burden of caregiving for patients with HF, caregivers of patients with HF required 3 times longer caregiving time than caregivers of patients without HF complications.³¹ In addition, we found that the time spent caregiving (hours) and lack of support from other family members were closely related to the burden of caregiving. The long caregiving time shown in this study may be related to a lack of support from other family members.^32–34 As longer caregiving time leads to increased caregiving burden, we suggest that recommending the use of available formal and informal resources may help to reduce caregivers’ negative appraisals.

The present study showed that caregivers who worked scored lower on impact on health in the negative appraisal compared with those who did not work. A previous study involving caregivers that cared for a spouse showed that working caregivers had better mental health than non-working caregivers.³⁵ Caregivers who were retired or not working tended to focus on caring for the patient, and therefore have less time away from caregiving than working caregivers. This may result in a greater impact on their own health. It is necessary to understand the living environment and social activities of caregivers and propose specific leisure and other activities to help caregivers maintain their social life.

Caregivers’ functional health literacy was associated with the financial impact of caregiving. The American Heart Association’s statement on caregiving for patients with HF indicated that caregivers of these patients need to be sufficiently health literate to meet the patient’s needs and perform complex tasks (e.g., management of the patient’s physical and mental symptoms, administration of medications, and collaboration/coordination with healthcare providers).² This has been suggested to be a ‘good’ indicator of the patient’s health literacy. A previous study involving caregivers of patients with end-stage renal failure showed that caregivers with adequate functional health literacy had a caregiving burden twice as low as caregivers with inadequate functional health literacy,³⁶ which was inconsistent with the results of this study. Therefore, the relationship between functional health literacy and caregiving burden among caregivers of patients with HF requires further study.

Study Limitations

First, there were many potential participants (180 pairs; 65.2%) who did not meet the eligibility criteria (e.g., patients/caregivers with dementia or cognitive impairment who had difficulty answering the questionnaire survey, patients living in facilities). Therefore, it is possible that the association may differ depending on the caregiver’s occupational status and sex. However, stratified analysis with these variables was not possible. In a further study, it will be necessary to reconsider the study design so that more patients with HF and caregivers can be included.

Second, the severity of HF among patients in this study was moderate (NYHA class II, 45%; class III, 45%), and 62% of patients who had been certified as requiring long-term care had a low level of support and care. This means that there might have been a bias in the frequency and burden of caregiving.

Last, there may have been a response bias among caregivers. In this study, caregivers were instructed to take the questionnaire home and complete it alone (rather than in the hospital room where the patient was present) to minimize response bias. However, when completing the questionnaire at home, they might have consulted with other family members. Further research should consider other methods for participants to complete self-administered questionnaires, such as having them complete the questionnaire in a separate room where they are not disturbed by patients or other family members.

Conclusions

The present findings indicated that the positive or negative appraisals of caregiving by caregivers of patients with HF were associated with caregivers’ physical and psychosocial factors, the length of time they provide care, and the frequency of support for general daily life related to medical treatment. To promote positive appraisals of caregiving by caregivers of patients with HF and reduce negative appraisals, it is necessary to consider the factors related to these evaluations and provide appropriate support for caregivers.

Acknowledgments

We express our deepest gratitude to all of the research participants who cooperated in this study, and to staff at the collaborating facilities, especially Tomoko Higuchi, Mana Izawa, Hikari Sunaga, Jinko Horio, Sachiko Kaneko, Satomi Kawata, Yu Sasaki, Aya Yamaguchi, and Miharu Maki for their efforts at their respective facilities. We also thank Edanz (https://jp.edanz.com/ac) for editing a draft of this manuscript.

Sources of Funding

This work was supported by JSPS KAKENHI (grant no. 17H04461/22H03425).

Disclosures

All authors declare they have no conflicts of interest with regard to this article.

IRB Information

This study was approved by the Kitasato University School of Nursing Research Ethics Review Committee (no. 2018-16-2).

Data Availability

The deidentified participant data will not be shared.

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