The relationship between care burden and quality of life in caregivers of hemodialysis patients

The chronic kidney diseases are among the main health problems all around the world [1]. The chronic kidney failure is one of the renal disorders, which is associated with irreversible loss of kidney function [2]. There are many treatment methods for chronic kidney failure, among which, the hemodialysis is the most common method [3]. In the united stated, from every 678,000 patients who suffer from end stage renal failure, 71% use some type of dialysis [4]. In Iran, the growth rate of this disorder is about 12% per year, which is higher than the world’s average [5]. While hemodialysis prevents the death of patients with chronic renal failure [6], it causes significant changes in their lifestyle. Hemodialysis reduces the patient’s energy level and, with the frequent need for dialysis, affects their ability to work and perform everyday activities, which disrupts the normal lives of patients and their caregivers [1]. Caregivers are people who, during the course of illness and treatment, are the most involved people in the care of patients and help them to adapt and manage their chronic disease [3]. Caregivers are usually family members or friends of the patient who take care of the patients on a daily basis and support them physically, mentally and socially, but do not receive any reimbursement for the care they provide [7].

The chronic nature of kidney failure, various complications of hemodialysis treatment, and significant changes in the lifestyle of patients, cause the caregivers and family members of the patient to experience a high level of care burden, in a way that, their mental health will be influenced to various degrees [3]. In this regard, results of various studies indicate that caregivers of hemodialysis patients are under pressure physically, emotionally and financially [7, 8], and are therefore exposed to a variety of physical and psychological risks [9]. Evidence suggests that caregivers of hemodialysis patients are under high levels of care burden [3, 10, 11]. Care burden is a term used for caregivers and is a kind of distress that caregivers suffer from as a result of caring for patient [12]. It also has physical, psychological, social, and financial aspects [13]. The results of a study show that caregivers of hemodialysis patients experience significant level of care burden that affects their quality of life [14]. Increasing care burden and decreasing quality of life can lead to complications such as depression. There is also a significant relationship between increased care burden and reduced care provided by caregivers, because care burden can have a very devastating impact on individuals. The amount of stress that caregivers of a chronic patient experiences is a serious illness [11]. Although caregivers of hemodialysis patients are at risk of developing various diseases and are also known as hidden patients, they are unfortunately often ignored [12].

Care burden affects caregivers’ quality of life and may result in reduced care provision and deteriorating condition for patients with chronic illness. The deterioration of patient’s condition can increase care burden and cause a vicious cycle, and if timely intervention is not done, it may lead to a gradual exhaustion of the caregivers [1]. Therefore, timely identification of these pressures in caregivers plays a decisive role in promoting their physical and mental health [3]. Thus, conducting a study on the care burden of the caregivers of hemodialysis patients and providing appropriate strategies in this regard seems necessary. Considering the lack of knowledge on the level of care burden in the caregivers of hemodialysis patients in Kermanshah, and since reviewing this problem is the first step towards providing a solution for this issue, the present study was conducted to determine the level of care burden and its relationship with the quality of life of caregivers of hemodialysis patients.

The mean and standard deviation of patients and caregivers’ age were 58.6 ± 15.02 and 42 ± 15 years, respectively. The mean and standard deviation of the duration that the patients were having hemodialysis was 4.12 ± 3.74 years. About 52.5% of the patients (No: 129) were men. The caring ability of 53.1% of the patients (No: 131) was low, 35.9% (No: 88) was moderate, and only 11% of the patients (No: 27) had high levels of caring ability. Furthermore, 86.2% of the patients (No: 212), in addition to kidney disease, had other chronic diseases such as cardiovascular disease and diabetes. Also, 67.2% of the caregivers (No: 165) were women, 62.2% (No: 153) were married, 53.9% (No: 133) were housewives and 48.1% (No: 118) had under-diploma (high school) education (Table 1).

The total score of care burden in caregivers was 64.8 out of 120. The score of care burden in the “time-dependence” domain was 17.6, in the “developmental” domain was 14.6, in the “physical” domain was 10.8, in the “social” domain was 12.08 and in the “emotional” domain was 9.7. The results showed that 42.7% of the caregivers (No: 105) had moderate level of care burden, 32.5% (No: 80) had a high level of care burden, 19.9% (No: 49) had low level of care burden, and 4.9% of them (No: 12) had a very high level of care burden.

There was a significant relationship between the age of caregivers and care burden (P < 0.001), so that, with an increase in the age of caregivers, the care burden also increased. Also, a significant relationship was found between the level of caregiver’s education and care burden (P < 0.001), so that, increased education level decreased care burden. With increasing capability of patient in self-care, the caring pressure of the caregiver decreased, which was statistically significant (P < 0.001). Also, there was a positive correlation between the patient’s incident of other chronic diseases and the care burden of caregivers (P < 0.001), so that, the care burden of caregiver who was caring for a patient with other chronic diseases was significantly higher than the caregivers whose patients did not have chronic diseases.

After analyzing the relationship between variables in univariate mode, in order to investigate the effect of each of the factors in the presence of other factors, variables with p-value of less than 0.2 entered into the multivariate covariance analysis (ANCOVA model) and finally, three variables including the caregiver age (P = 0.045), the patient capability in self-care (P < 0.001), and also the incidence of other chronic diseases (P = 0.022) remained in the ANCOVA model. Thus, these variables as factors influencing care burden were discussed in this study (Table 2). It should be noted that in multivariate analysis, the interaction between the remained last three variables was also evaluated and none of the interactions had a significant P value.

The mean and standard deviation of caregivers’ quality of life was 76.3 ± 13.7 out of 130. The score of quality of life in the “Physical domain” was 20.2, in the “Psychological domain” was 17.7, in the “Environment domain” was 23.3 and in the “Social Relationship domain” was 8.8.

Pearson correlation test showed a negative and significant correlation between the total scores of care burden and quality of life (r: -0.436; P < 0.001). Concerning the relationship between different domains of care burden and quality of life, the results indicated a negative and significant correlation between the environmental and the social domains of quality of life and all dimensions of care burden. The physical and psychological domains of quality of life had a negative and significant correlation with all dimensions of care burden, except for the time-dependence domain (Table 3).

In our study, most caregivers experienced moderate to very high levels of care burden, which is consistent with many studies that have been investigating the care burden in caregivers of hemodialysis patients [3, 11, 20, 21]. Meanwhile, the results of several studies indicated that caregivers experienced relatively moderate level of care burden [22]. The level of care burden experienced by caregivers can be influenced by many factors such as governmental and non-governmental support of caregivers and dominant culture of society. In this regard and based on existing evidence [3, 10, 11, 21, 22], care burden in developing countries appears to be higher. In developing countries (such as Iran), compared with developed countries, the level of material and spiritual support provided for caregivers is not adequate [23]. Also, caring reactions, coping strategies, and attitude towards the care are influenced by culture. Accordingly, families are responsible for the care of patients due to the family structure in eastern societies like Iran [12]. In our opinion, the aforementioned factors may affect the level of care burden that caregivers experience in different countries and societies.

In our study, the caregivers’ quality of life was moderate. This finding is in line with a number of studies that have examined the quality of life in caregivers of hemodialysis patients. In one study, 52% of the caregivers of hemodialysis patients had moderate and low levels of quality of life [24]. Gill in a study compared the quality of life in caregivers of chronic renal failure patients in non-hemodialysis and hemodialysis patients. Quality of life in caregivers of patients who did not undergo dialysis was significantly higher than the other group, indicating a disorder in the quality of life of caregivers of hemodialysis patients [25]. The results of Shdaifat study, which examined the quality of life of caregivers of hemodialysis patients as well hemodialysis patients compared to the general population, showed that the average quality of life of patients and their caregivers was lower than the general public [26]. Although the relationship between care burden and quality of life of caregivers was not directly investigated in this study, the study referred to common complications of dialysis such as severe dietary restrictions, reduced social and recreational activities, medical complications, economic pressure, marital conflicts, sexual dysfunction, emotional stress, and anxiety as factors the affect the quality of life of patients and their caregivers. Also, the impact of hemodialysis on issues such as sleeping, eating, working, and planning for daily activities can be a challenge for patients and families, and together can lead to permanent changes in family roles and expectations, increased level of stress, and lower quality of life of individuals. Additionally, many of the problems associated with the care, such as changes in sleep patterns, social activity, and holiday plans and feelings of dependency on dialysis are among factors that affect the quality of life of caregivers [25, 26].

Abbasi [3] also reported a significant and inverse correlation between the total care burden and ability to perform personal activities, which is in line with the findings of this study. He also revealed a positive and significant correlation the existed between the total care burden and the duration of illness. In his study, caregivers with inappropriate economic status were significantly more prone to care burden [3].

Unlike the present study, Mashayekhi et al. [11] found a statistically significant relationship between the sex of the patients, their income and the level of care burden in their caregiver. Thus, the male caregivers and caregivers of low-income patients were experiencing higher levels of care burden. They also revealed no significant relationship between care burden and patient’s occupation, education, marital status, comorbidities and frequency of hemodialysis per week [11]. The differences in our findings and the results of Mashayekhi et al. study could be related to the difference in the research environment, amount of supporting facilities available to caregivers, and the relatively small sample size (51 caregivers) in the Mashayekhi et al. study. Bayoumi [10] reported a positive and significant correlation between the total care burden and patient’s age, but there was a significant but negative correlation between the total care burden and the caregiver’s age, patient’s level of education, and the caregiver’s level of education. The difference in our findings and the results of above study can be due to low sample size (50 caregivers) in the Bayoumi study, because low sample size reduces the level of transferability of study and also the chance to discover any correlation and association between variables.

In the current study, there was a significant and negative correlation between the total scores of care burden and quality of life, so that, the quality of life decreased with increasing care burden. Several studies suggested a negative correlation between care burden and quality of life in caregivers of hemodialysis patients [14, 26‐28]. Mashayekhi reported a significant and inverse correlation between the quality of life and care burden in caregivers of hemodialysis patients [28]. Belasco found that caregivers of hemodialysis patients experience significant level of care burden that affects their quality of life [14]. Grant et al. concluded that care burden is also related to the quality of life of patients, so that, over time, reduced quality of life of the caregivers leads to decreased quality of life of patients [27]. We believe that, due to the chronic nature of hemodialysis and the high caring need of hemodialysis patients, their caregivers tolerate a high level of care burden, which inevitably leads to a decrease in the caregivers’ quality of life. In this regard, necessary support is required for caregivers of hemodialysis patients, and various governmental and non-governmental facilities and privileges should be provided to these people.

Our study encountered a number of limitations. The impossibility of determining the relationship between cause and effect due to the cross-secularity of the study was one of the limitations. The data collection method, which was based on self-reporting, might have also affected the outcome of the study. Despite the fact that, a desirable condition for measuring the level of care burden in caregivers of hemodialysis patients is to compare them with a control group at the community, the lack of control group in this study was one of our limitations and it is suggested to consider this issue in future studies. For future studies, it is suggested that, the relationship between care burden and quality of life in other countries should be studied and compared. Also, predictive factors of care burden and quality of life should be examined in caregivers of hemodialysis patients.

In our study, caregivers of hemodialysis patients experienced a significant level of care burden that had a negative and significant correlation with their quality of life. Considering the effect that, care burden affects the quality of life of caregivers and their health as well as patient’s, comprehensive attention should be paid to the needs of caregivers and they should be provided by adequate social, economic, physical and psychological support.