Heart failure is a chronic debilitating disorder characterized by high rate of mortality, frequent hospitalization, and low quality of life (Paz et al., 2019). The number of people with heart failure has been reported to be >5.8 million in the United States and >23 million worldwide (Liu & Eisen, 2014). Heart failure is a major cause of disability and mortality in older adults in Iran, with approximately 3,337 per 100,000 of the population affected by this disease. Most individuals with heart failure are older adults and those who are socially isolated, and these populations are affected by all factors that can complicate attempts to follow a treatment regimen (Fathani et al., 2016).
Families play a key role in the quality of life of older and frail adults (Andrade et al., 2020). Failure to be active causes older adults with chronic heart failure to lose their independence and depend on others for self-care, which negatively affects quality of life of family caregivers (Puurveen et al., 2018). Individuals with chronic disease could affect quality of life of their families because tensions imposed on one family member could affect the whole family (Latham, 2016). On the other hand, taking care of the sick individual may deplete the energy of the family; expose them to physical and emotional discomfort and isolation; and cause frustration, desperation, helplessness, fear, embarrassment, and even the desire to die, the sum of which is academically referred to as “burden of care” (Etemadifar et al., 2014).
Burden of care is the physical, psychological, and social responsibility of a caregiver caused by imbalance between caring needs and other responsibilities of caregivers. This imbalance relates to social and personal roles, physical and emotional status, and financial resources of caregivers (Swartz & Collins, 2019). Researchers believe optimal family functioning could reduce caregiver burden; however, the burden of care may influence family functioning in various ways (Moore, 2010).
Family functioning is the social and emotional communication of family members, and is the way people solve problems (Van Schoors et al., 2017). In other words, family functioning means the ability of the family to coordinate or adapt to life changes, resolve conflicts, hold members together, succeed in disciplinary patterns, observe the boundaries among individuals, and enforce the rules and principles governing this institution to protect the entire family system (Yosefiet al., 2016).
One model for evaluating family functioning is the McMaster model, which includes seven dimensions: communication, affective involvement, affective responsiveness, roles, problem solving, behavioral control, and general functioning (Boterhoven de Haan et al., 2015; Epstein et al., 1978). According to Wang and Huang (2016), in Taiwan, family support plays an essential role in improving the health of older adults, and symptoms of depression and cognitive impairment in certain family members can affect family functioning. A study in Brazil showed a significant relationship between family functioning and depression symptoms, noting that the presence of a well-functioning family was essential for the well-being and quality of life of older adults (de Oliveira et al., 2014). Other studies have shown the importance of family functioning for caregivers of older adults with heart failure and the problems they face.
In many countries, caregivers are supported by associations, home visits, and counseling and training sessions; however, in Iran, given the cultural conditions, close family affinities, and lack of home care facilities, the majority of care for individuals with heart failure is provided by family caregivers. Furthermore, the researchers' (M.G., P.M.S.) experience with caregivers of older adults with heart failure also confirms that these caregivers are sometimes ignored and forgotten, and their problems are often neglected. Therefore, the current study was conducted to investigate the relationship between caregiver burden and family functioning in family caregivers of older adults with heart failure.
The current cross-sectional study, performed between May and July 2018, aimed to investigate the relationship between burden of care and family functioning in Iranian caregivers of older adults (age >65 years) with heart failure.
One hundred forty caregivers of older adults with heart failure were selected by convenience sampling. Inclusion criteria were: family members who took care of an older adult (>65 years old) with chronic heart failure for at least 6 months, were fluent in Farsi, were >18 years old, and did not have an incurable illness. The exclusion criterion was failure to answer the questionnaire completely.
A demographic information questionnaire, the Zarit Burden Inventory (ZBI) (Zarit et al., 1985), and the Family Assessment Device (FAD) (Epstein et al., 1978) were used to collect data.
The demographic information questionnaire included caregivers' age, sex, marital status, education level, employment status, monthly income, duration of care, daily care hours, presence of assistant for caring at home, relationship with patient, presence of chronic illness, number of patients under care, history of participation in training classes, and number of caregivers. This questionnaire also collected demographic information about patients' age, sex, duration of illness, marital status, education level, severity of disease, other chronic diseases, and insurance coverage.
The ZBI, which has a validity of 0.61 and reliability of 0.71, was designed by Zarit et al. (1985) for use in the United States. Etemadifar et al. (2014) customized the ZBI for use in Iran. The validity of the questionnaire in the current study was 0.79 and reliability was 0.94, according to the test–retest method. This questionnaire comprises 22 items based on a 5-point Likert scale, with responses of never (0), rarely (1), sometimes (2), most often (3), and always (4). Total score ranges from 0 to 88, with higher scores indicating higher burden of care. Scores <30 indicate mild, 30 to 60 indicate moderate, and >60 indicate severe burden of care.
The FAD, with acceptable validity and reliability, was developed by Epstein et al. (1983) in Canada and was used to evaluate family functioning. The FAD is a 60-item tool that identifies seven dimensions of family functioning: (1) problem solving, the family's ability to resolve problems, thus enabling it to maintain effective functioning; (2) communication, the family's ability to successfully exchange information; (3) role, the clear and equitable assignment of tasks and their responsible execution by family members; (4) affective responsiveness, the family's ability to experience an appropriate range of affects in response to stimuli; (5) affective involvement, the extent to which members of the family value each other's concerns and activities and take interest in them; (6) behavior control, the expression and maintenance of behavioral standards among family members, assessed in different situations, including psychological, social, and dangerous situations; and (7) general functioning, the total assessment of family functioning in all dimensions (Miller et al., 1985; Pressler et al., 2009).
Each question in the FAD is related to one dimension of family functioning. Yousefi(2012) normalized the FAD questionnaire for use in Iran, with a validity of 0.94 and reliability of 0.83 in the current study. Each item is based on a 4-point Likert scale, with responses of I totally disagree (4), I disagree (3), I agree (2), and I totally agree (1), with a total score of 60 to 240. The higher the score, the poorer the family functioning. The FAD is lengthy and could cause fatigue; therefore, data were collected when participants were in suitable physical and mental conditions.
The current study was performed after acquiring the code of ethics. The study setting included the cardiac care units and cardiology departments of two teaching hospitals in southeast Iran. After obtaining permission and reference letters from the Nursing and Midwifery School, Shafa Hospital, and Bahonar Hospital, the primary researcher (M.G.) referred to the related wards. The researcher identified eligible samples using the convenience sampling method and provided sufficient information about the research objectives and its importance. Participants completed the questionnaire in the best possible physical and mental conditions. The completed questionnaires were received on the same shift. Measures were taken so that data were collected at times other than during physicians' rounds and family visitation hours, so as not to interfere with patients' treatment, and so that caregivers had enough time to answer the questionnaire. To minimize the impact of patient hospitalization on the caregiver, data were collected when the patient was in stable condition and the caregiver was at ease. Informed consent was given by all participants, and they were assured that their personal information would remain confidential. Questions that caused discomfort for participants were excluded from the study.
SPSS 19 was used to analyze the data. Descriptive statistics (frequency, percentage, mean, and standard deviation) were used to describe demographic characteristics and mean scores. Inferential statistics (Pearson correlation coefficient, independent t test, analysis of variance) were used to determine relationships among variables.
Caregivers had a mean age of 38.74 years (SD = 12.77, range = 14 to 72). Most caregivers were female (61.9%) and married (79%). Some caregivers had a Bachelor's or higher degree (37.7%), were employed (50%), and had a monthly income of ≤10 million rials (approximately 237.5 USD) (44.2%). The maximum duration of care was 1 month (30%), the average care rate was 5 to 8 hours per day (31.4%), and most caregivers (95.6%) cared for only one patient. In addition, 48% of caregivers were affected by a chronic disease themselves, and only 21.1% had attended training classes for caring for individuals with heart failure. Most caregivers had assistance at home (69.1%), and the average number of caregivers at home was two (Table 1).
Participant Demographics (N = 140)
Individuals with heart failure had a mean age of 69.55 years (SD = 16.4, range = 51 to 86) with disease duration of 3 to 8 years. Most patients were married (85.7%), some had a high school education (38.4%), and many had class III heart failure (64.9%) according to the New York Heart Association Functional Classification. Furthermore, 48.5% of those with heart failure had another chronic disease, and 94.2% were covered by insurance.
The mean score of care burden (31.48 [SD = 13.88]) was moderate. The highest mean score of care burden belonged to Questions 21 (Do you feel you need to do more for the patient?) and 14 (Does the patient consider you the best person to take care of them?) (3.34 [SD = 1.32] and 3.34 [SD = 1.38], respectively), in which caregivers believed they had to do more for their care recipients, and were concerned whether they were the best caregivers from the individual's viewpoint. The lowest mean score of care burden belonged to Questions 19 (Do you have any doubts about what you are doing for the patient?) and 5 (Do you feel anger or discomfort while taking care of the patient?) (1.54 [SD = 0.80] and 1.54 [SD = 0.88], respectively), showing that caregivers are less skeptical about what they are doing for the care recipient and experience less anger and discomfort when caring for them.
The mean total score of family functioning (2.31 [SD = 0.22]) was moderate. The lowest mean score of family functioning was related to the problem solving dimension (1.66 [SD = 0.47]), and the highest mean score of family functioning was related to affective responsiveness (2.53 [SD = 0.59]). Because a higher score equates to poorer family functioning, the best functioning of the family was in problem solving, and the weakest was associated with affective responsiveness.
The results of the current study showed a direct correlation between mean score of care burden and total score of family functioning (r = 0.345, p = 0.047). According to the scoring scale in the FAD, as the score increases, family functioning becomes weaker; therefore, the higher the burden of care, the poorer the family functioning. Moreover, there was no significant relationship between the score of burden of care and the scores related to family functioning dimensions of communication, roles, affective involvement, behavioral control, and general function; however, there was a direct relationship between the score of burden of care and the dimensions of problem solving (r = 0.206, p = 0.032) and affective responsiveness (r = 0.115, p = 0.045). Therefore, the higher the burden of care score in caregivers of individuals with heart failure, the lower their problem solving and affective responsiveness (Table 2).
Relationship Between Mean Score of Caregivers' Burden and Family Functioning
The mean score of care burden was higher in female, single, retired caregivers with high school education and low-paid jobs, longer care periods, a spousal role, fewer caregivers, chronic illness, no care training, and no alternative caregiver. There was a significant relationship between caregivers' burden of care score and having a chronic disease (t = 2.76, p = 0.007) and older age (r = 0.257, p = 0.007) (Table 3).
Relationship Between Demographic Characteristics of Caregivers and Burden of Care
Family functioning was weaker in male, married, and unemployed caregivers, and an increase in level of education and duration of care affected family functioning. In cases where the caregiver was the patient's child, the caregiver had a chronic illness, the caregiver had not received any training in the care of the patient, or the caregiver did not have assistance at home, they faced more family malfunction. Family functioning score had a significant difference in regard to employment status (p = 0.006). According to Tukey's test, there was a significant difference in the family functioning score among unemployed, employed, and retired individuals. Thus, family functioning of unemployed caregivers was significantly lower (Table 4).
Relationship Between Demographic Characteristics of Caregivers and Family Functioning
The results of the current study showed that caregivers of older adults with heart failure had a moderate burden of care. Consistent with these results, a study in Iran showed that caregivers of individuals with heart failure had a moderate burden of care and caregivers of individuals with chronic diseases were affected by varying degrees of care burden due to lack of knowledge and support (Etemadifar et al., 2014). Another study showed that caregivers of individuals with heart failure in China had a moderate burden of care (Hu et al., 2016). Another study reported that burden of care can reduce quality of life of caregivers of individuals with heart failure, and even cause spiritual and psychological problems (Shahrbabaki et al., 2012). Fathani et al. (2016) reported that caregivers of individuals with heart failure faced many problems due to respiratory and cardiac complications and frequent hospital admission. In another study, Bozkurt Zincir et al. (2014) found that the degree of care burden was severe when young children were responsible for taking care of their parent with heart failure, and in most cases the burden of care manifested as anxiety and depression. Other studies in the United States have shown that the burden of care for caregivers of individuals with Alzheimer's disease is mild (Clyburn et al., 2000). Programs that involve promoting adaptive skills and enhancing caregivers' knowledge, attitudes, and beliefs have been shown to be effective in reducing burden of care (Clyburn et al., 2000).
The results of the current study showed that the total functioning of families that include individuals with heart failure is not ideal. Specifically, these families are affected by malfunctioning, especially in regard to communication, roles, affective involvement, behavioral control, affective responsiveness, and general function. According to the current results, the best family functioning was in the problem solving dimension, indicating that these families did not have a particular problem in managing practical and everyday issues and had most likely used appropriate strategies to solve problems. The poorest family functioning was related to the dimension of affective involvement, meaning that family members had less emotional interest or investment in each other. Shahrbabaki et al. (2012) argued that caregivers who had years of experience taking care of someone with a chronic disease were able to solve problems; however, these caregivers may have had more psychological and spiritual motivation as a result of their experience (Shahrbabaki et al., 2017). Yousefiet al. (2016) showed that the poorest family functioning was related to affective involvement and the best functioning was associated with roles. Conversely, Wang and Huang (2016) reported good family functioning in a group of caregivers who cared for older adults, showing that supporting families in the form of educational and support programs, receiving support from family members, and family communication played significant roles in family functioning, quality of care, and improvement of patients' disease status and symptoms. A study conducted in Taiwan showed that family functioning of individuals with chronic disease was favorable, and researchers were able to significantly improve the function of these families through an educational program (Yeh et al., 2016).
The results of the current study showed that the higher the burden of care, the poorer the general family functioning. More specifically, higher burden of care is associated with poorer family functioning in the dimensions of problem solving and affective responsiveness. In agreement with the results of the current study, other researchers have demonstrated that the physical, psychological, and social health of family members are negatively influenced by higher levels of care burden, leading to weakness in family functioning (Rashidikoochi et al., 2016). According to Hu et al. (2016), caring for an individual with heart failure harms the health of caregivers; as a result, the burden of care causes depression and malfunction, and reduces quality of life. Furthermore, researchers believe that religion, customs, and culture greatly effect the burden of care and related problems (Hu et al., 2016).
The degree of care burden was higher for caregivers who are female, single, and retired, as well as those with a high school education, lower income, longer duration of care, lack of assistance in care, chronic illness, and lack of training in care. There was also a significant relationship between the score of care burden and the caregivers' age and whether they were affected by chronic disease (i.e., burden of care was significantly higher in older caregivers with chronic disease). Mashayekhi et al. (2016) showed that burden of care was higher in older and lower paid caregivers. Another study in the United States found no relationship between caregivers' age and burden of care (Ågren et al., 2012). A study by Kate et al. (2013) found that caregivers of individuals with schizophrenia were affected by high levels of care burden and that female, uneducated caregivers with poor socioeconomic conditions were more greatly impacted by burden of care. A study by Etemadifar et al. (2014) showed that a family support program had a significant effect on reducing care burden for caregivers of individuals with heart failure. Another researcher found a positive correlation between time of care and burden of care, (i.e., the longer the duration of care, the higher the level of care burden), which takes joy out of caregivers' lives and reduces their function in other aspects of life (Bozkurt Zincir et al., 2014).
The results of the current study also indicate that employment status has a significant effect on family functioning; family functioning of unemployed caregivers was significantly undermined.
Although family functioning was weaker in married male caregivers with higher education, chronic disease, longer duration of care, and lack of assistance, there was no significant relationship between these factors and family functioning. In addition, there was no significant relationship between family functioning and age and number of caregivers. According to Hosseini et al. (2012), there was no statistically significant relationship between demographic variables and family functioning dimensions. Other results have shown that family functioning has a significant relationship with the parental education level of caregivers of drug-dependent children (Mirzaei Alavijeh et al., 2013). In one study, family functioning of caregivers of children with asthma improved by designing training and family support programs (Yeh et al., 2016). According to a survey, caregivers' age had a reverse relationship with family functioning (i.e., the older the caregiver, the weaker the family functioning) (Quintana et al., 2013).
The results of the current study are important because they show that caregivers of individuals with heart failure face numerous problems, causing them to experience high levels of stress and impairing family functioning dimensions such as problem solving and affective responsiveness. Therefore, health care providers need to focus more on caregivers of chronic diseases.
The current study had some limitations. First, all research data were collected through self-report questionnaires in a small sample. Thus, a study with a larger sample and random selection would generate more reliable results. Second, convenience sampling was performed at the hospital because it was difficult to identify and access caregivers at home. Third, the stress of patient hospitalization on caregivers and the significant amount of time it took to complete the questionnaires may have affected data collection. However, to minimize this impact, researchers tried to collect data when the patient was stable and the caregiver was at ease.
The current study showed that the higher the burden of care in caregivers of individuals with heart failure, the weaker the family functioning. Increasing burden of care can lead to inadequate care in addition to damage to family function. Therefore, health systems should support caregivers in addressing their psychological and family problems, which will help them provide the appropriate care, benefiting both the caregiver and care recipient. By developing caregivers' adaptation skills, the stress and pressure of caregiving can be partially reduced, improving caregivers' mental and physical health and the care recipient's prognosis. Therefore, accurate training and discharge programs should be designed to reduce caregivers' burden of care and increase their family functioning and quality of life through increasing knowledge regarding care. Studies are needed in different communities to identify the needs of vulnerable caregivers and to develop interventions for improving caregivers' quality of life.
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Participant Demographics (N = 140)
| Female||86 (61.9)|
| Male||54 (38.1)|
| Married||111 (79)|
| Single||29 (21)|
| Uneducated||13 (9.4)|
| High school||27 (19.6)|
| Associate's degree||49 (33.3)|
| Bachelor's degree or higher||52 (37.7)|
| Employed||71 (50)|
| Unemployed||56 (40.6)|
| Retired||13 (9.4)|
|Monthly income (rials)|
| <10 million||71 (50.71)|
| 10 to 30 million||55 (39.29)|
| >30 million||14 (10)|
|Duration of care|
| 1 month||49 (35)|
| 2 to 11 months||32 (22.85)|
| 1 to 5 years||36 (25.71)|
| 6 to 10 years||23 (16.44)|
|Care hours per day|
| 0 to 4||39 (27.85)|
| 5 to 8||50 (35.71)|
| 9 to 12||20 (14.28)|
| ≥13||31 (22.16)|
| Yes||94 (69.1)|
| No||46 (30.9)|
|Relationship to patient|
| Child||69 (49.29)|
| Spouse||27 (19.29)|
| Parent||16 (11.42)|
| Sibling||14 (10)|
| Other||14 (10)|
| No||91 (65)|
| Yes||48 (35)|
|No. of care recipients|
| 1||134 (95.6)|
| >1||6 (4.4)|
| No||108 (79.9)|
| Yes||32 (21.1)|
|Mean (SD) (Range)|
|Age (years)||38.74 (12.77) (14 to 72)|
|No. of caregivers at home||2.29 (1.24) (0 to 2)|
Relationship Between Mean Score of Caregivers' Burden and Family Functioninga
|Dimensions of Family Functioning||Caregivers' Burden|
|Pearson Coefficient||p Value|
Relationship Between Demographic Characteristics of Caregivers and Burden of Care
|Characteristic||Mean (SD) (Range)||Test Statistic||p Value|
|Gender||t = 1.26a||0.210|
| Female||49.67 (1.87) (25 to 93)|
| Male||46.27 (1.70) (24 to 70)|
|Marital status||t = 0.52a||0.604|
| Single||49.70 (2.66) (24 to 84)|
| Married||48.02 (1.54) (25 to 93)|
|Education level||F = 0.383b||0.765|
| Uneducated||47.66 (4.84) (29 to 71)|
| High school||50.36 (2.83) (30 to 75)|
| Associate's degree||46.72 (2.54) (24 to 93)|
| Bachelor's degree or higher||49.23 (1.93) (25 to 84)|
|Employment status||F = 5.39b||0.680|
| Employed||50.2 (1.75) (29 to 92)|
| Retired||57.80 (6.14) (30 to 93)|
| Unemployed||44.13 (1.73) (25 to 71)|
|Monthly income (rials)||F = 0.09b||0.408|
| <10 million||50.22 (14.87) (25 to 93)|
| 10 to 30 million||49.02 (13.43) (29 to 84)|
| >30 million||48 (2.64) (46 to 51)|
|Duration of care||F = 1.10b||0.865|
| 1 month||46.55 (2.15) (25 to 73)|
| 2 to 11 months||53.28 (3) (34 to 84)|
| 1 to 5 years||51.20 (3.07) (35 to 93)|
| 6 to 10 years||52 (4.28) (30 to 92)|
|Care hours per day||F = 0.93b||0.454|
| 0 to 4||49.61 (2.47) (29 to 75)|
| 5 to 8||46.68 (1.95) (33 to 83)|
| 9 to 12||54.09 (6.14) (25 to 92)|
| ≥13||50.78 (3.54) (30 to 93)|
|Alternative caregiver||t = 1.26a||0.210|
| Yes||46.90 (1.48) (29 to 92)|
| No||50.56 (2.73) (24 to 93)|
|Relationship to patient||F = 0.964b||0.431|
| Parent||50.66 (6.18) (30 to 84)|
| Sibling||51.37 (4.73) (40 to 83)|
| Child||49.33 (1.66) (31 to 92)|
| Spouse||53.10 (6.30) (29 to 93)|
| Other||43.47 (2.93) (25 to 70)|
|Chronic disease||t = 2.76a||0.007|
| Yes||52.72 (2.53) (29 to 93)|
| No||45.38 (1.37) (24 to 70)|
|Number of care recipients||t = 0.31a||0.757|
| 1||48.24 (1.33) (24 to 93)|
| >1||47.68 (1.65) (36 to 84)|
|Educational classes||t = −0.321a||0.749|
| Yes||47.70 (2.48) (29 to 84)|
| No||51.56 (2.71) (24 to 93)|
Relationship Between Demographic Characteristics of Caregivers and Family Functioning
|Characteristic||Mean (SD) (Range)||Test Statistic||p Value|
|Gender||t = −0.25a||0.803|
| Female||138.59 (2.22) (94 to 169)|
| Male||139.47 (2.40) (115 to 161)|
|Marital status||t = −0.53a||0.592|
| Single||137.07 (2.68) (118 to 150)|
| Married||139.30 (2.02) (94 to 169)|
|Education level||F = 0.199b||0.896|
| Uneducated||137.40 (19.06) (111 to 162)|
| High school||136.33 (16.17) (115 to 169)|
| Associate's degree||139.40 (2.57) (100 to 161)|
| Bachelor's degree or higher||140.13 (2.46) (94 to 163)|
|Employment status||F = 0.38b||0.006|
| Employed||138.02 (1.82) (94 to 157)|
| Retired||138.57 (8.08) (111 to 162)|
| Unemployed||141.21 (3.14) (100 to 169)|
|Monthly income (rials)||F = 0.91b||0.906|
| <10 million||139.42 (2.49) (111 to 163)|
| 10 to 30 million||140.38 (2.61) (64 to 162)|
| >30 million||129.66 (7.66) (122 to 145)|
|Duration of care||F = 0.24b||0.353|
| 1 month||136.09 (3.98) (94 to 163)|
| 2 to 11 months||137.46 (3.03) (122 to 158)|
| 1 to 5 years||140.35 (3.05) (118 to 161)|
| 6 to 10 years||138.44 (4.75) (119 to 169)|
|Care hours per day||F = 0.88b||0.425|
| 0 to 4||138.55 (3.03) (111 to 162)|
| 5 to 8||136.41 (3.10) (94 to 161)|
| 9 to 12||135.83 (4.51) (119 to 145)|
| ≥13||144.70 (4.75) (118 to 169)|
|Alternative caregiver||t = 1.68a||0.097|
| Yes||140.41 (2) (94 to 169)|
| No||134 (2.99) (115 to 157)|
|Relationship with patient||F = 1.30b||0.278|
| Parent||139.11 (2.84) (125 to 153)|
| Sibling||138 (4.39) (122 to 147)|
| Child||142.26 (2.15) (111 to 169)|
| Spouse||132.83 (4.72) (115 to 147)|
| Other||133.14 (6.75) (94 to 146)|
|Chronic disease||t = 0.05a||0.954|
| Yes||139.23 (2.50) (111 to 169)|
| No||139.02 (2.33) (94 to 163)|
|Number of care recipients||t = 0.182a||0.856|
| 1||139.47 (1.72) (94 to 169)|
| >1||139.02 (2.38) (125 to 141)|
|Educational classes||t = 0.265a||0.089|
| Yes||132 (5.51) (100 to 158)|
| No||140.26 (1.80) (94 to 169)|