Evaluation of caregiver burden and depression in caregivers of palliative care patients in the emergency department

Introduction

Palliative care (PC) was defined by the World Health Organization in 2006 as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual” [1]. Palliative care patients may need assistance during their diseases. It is well known that the caregivers of PC patients have a very important role in this kind of care. In Turkish culture, most caregivers consist of family members. Palliative care comprises patients and families in this time-consuming process and it aims to improve their quality of life [2]. Caregivers can face emotional, psychological and physical difficulties during this care [3]. Caregiver burden (CB) is defined as stress or load which is felt by caregivers who attend to chronically ill, disabled or elderly patients [4]. There are many studies about CB in different diseases. It can increase the risk of cardiovascular diseases, cancer and somatic morbidity [5]. In addition, it is well known that CB can also affect patients. It may cause depression in patients and it may even worsen the prognosis of diseases. The underlying cause can be feeling unprepared for this care not only psychologically but also socially, physically and economically. The psychological factors are grief, guilt, anxiety and depression. Patient related factors such as presenting multiple symptoms, onset of terminal stage and reduction of functional status can aggravate these psychological factors [6]. In a previous study it was stated that female gender, spousal relationship to the recipient of care, high perceived caregiver burden, financial problems, familial conflict, poor patient performance status, duration of illness, lung cancer diagnosis and palliative treatment intent act as factors increasing CB [7].
One of the important components of supplying PC effectively is early detection of CB. Hereby, solutions can be found to prevent CB. In Turkey, there is no hospice care; therefore home care represents a large portion of PC. If CB proceeds to depression, it will also decrease the quality of care given to patients. Palliative care is patient centered care and even financial problems of patients must be determined by the PC team in order to correct all errors in the system. In the present study, the Zarit Caregiver Burden Inventory (ZCBI) was used to evaluate CB. Caregiver’s depression status was evaluated by the Beck Depression Inventory (BDI). Due to the fact that multiple factors can cause CB, in addition to demographic information, economical and educational status, etc., current symptoms and performance status of patients were also assessed by the Karnofsky Performance Scale (KPS) and Edmonton Symptom Assessment System (ESAS). The aim of this study was to evaluate the variables that affect CB and to detect a possible relation between CB and depression. Consequently, early prevention of CB can be achieved only by determining the causes of CB.

Material and methods

This prospective study included caregivers of patients needing PC who were admitted to the emergency department (ED) of a university hospital. Patients were chosen according to the first step of the 3-step screening model belonging to a study titled “Content validation of a novel screening tool to identify emergency department patients with significant palliative care needs” [8]. There are two inpatient PC units, 1 outpatient PC unit and also home health care services in the province where the present study was conducted. Demographic information (age, gender, marital status), relation to patient, financial status and whether they receive financial support from the government or follow-up in PC units, diagnosis and duration of disease of their patients and the outcome of follow-up in the ED (discharge, clinical or intensive care unit hospitalization, death) were collected in forms from all caregivers. Additionally, KPS and ESAS were applied to the patients for detailed evaluation of their current state. The Zarit Caregiver Burden Inventory was used to evaluate the burden levels of caregivers. The Zarit Caregiver Burden Inventory consists of 19 self-reported items which have responses from 1 (never) to 5 (nearly always). The items are generally social and emotional and high scores indicate a heavy burden. Özlü et al. conducted the Turkish validity and reliability study of ZCBI [9]. The Beck Depression Inventory is a touchstone for presenting depression by evaluating cognitive, emotional, physical and motivational symptoms. Its validity and reliability study was conducted by Hisli in 1989 [10]. Scores in the range 10–16 are assessed as mild depressive symptoms, 17–29 moderate depressive symptoms, and 30–63 severe depressive symptoms in this inventory. The possible relation between CB and depression was evaluated in this study. Additionally, the related factors that affect CB were also assessed.

Statistical analyses

The data were analyzed using the software IBM SPSS Statistics Version 22. Frequency (f) and percentage (%) values ​​of all variables were calculated. Descriptive analyses were used to provide general information about the sample. The mean and standard deviation were used for the quantitative variables fitting a normal distribution, while median and interquartile range (25–75%) were used for the variables that did not fulfil this requirement, along with counts and percentages. The independent sample t-test and one-way analysis of variance were used to compare the normally distributed group means. The Kruskal-Wallis H test was used for inter-group comparisons of quantitative parameters that did not show normal distribution. Spearman’s correlation coefficient was performed to evaluate the relationship between parameters. In the analyses, p < 0.05 was considered significant.

Results

Fourty four (57.1%) female and 33 (42.9%) male relatives were included in the study. 74% of them were married and 26% were single. 21.1% had only one child, while 52.6% had 2 or more children. 26.3% had no children. The income level of the majority was between 2000 and 3000 TL (39.5%). 13% of those participating in the study received government support while 87% did not. 67.5% of the patients who received PC services were cancer patients and the rest of their illnesses are presented in Table 1 displaying their ratios accordingly. 40.8% of the patients who received care had been diagnosed less than 6 months ago, 39.5% between 6 months and 5 years, and 19.7% more than 5 years ago. Only 18.6% of the patients were followed up in PC services while the majority (81.4%) were not. 44.3% of those who did not receive any follow-up in PC services stated the reason as having no information about these facilities. 78.7% of the caregivers were first degree relatives. During the study, 52.1% of the patients were hospitalized and 5.5% of them died. It was observed that 32% of the caregivers had moderate depression according to the BDI (Table 1).
The age distribution of the study group was 17–81 years (mean ±SD: 40.24 ±14.13). The mean BDI score was 21.68 ±12.64 points, while the mean ZCBI score was 45.70 ±16.49 points (Table 2).
In Table 3, the BDI and ZCBI scores of the caregivers are compared according to whether the patients they were responsible for showed the symptoms stated on the ESAS; although not statistically significant, the caregivers tending to patients with pain have higher BDI and ZCBI scores. Additionally, a statistically significant difference was found between caregivers of patients with symptoms of fatigue, drowsiness, insomnia, skin/nail changes and caregivers of patients without these symptoms according to BDI scores (p-values economical – 0.013, 0.030, 0.001, respectively). The difference between ZCBI scores of caregivers tending to patients with skin/nail changes (mean ±SD: 54.05 ±13) and caregivers of patients without this symptom (mean ±SD: 44.61 ±14.21) was found to be statistically significant (p – 0.013) (Table 3).
There was no statistically significant difference between BDI and ZCBI scores of caregivers according to KPS scores of patients (p-values – 0.243, 0.304, respectively) (Table 4).
In Table 5, the socio-demographic characteristics of caregivers and their BDI and ZCBI scores are compared; it was observed that female caregivers had higher BDI (mean ±SD: 23.26 ±12.46) and ZCBI scores (mean ±SD: 48.59 ±15.39) compared to male caregivers, but the difference was not statistically significant (p-values, respectively: p – 0.213, p – 0.076). Depending on the marital status, the BDI score and ZCBI score do not differ statistically (p-values – 0.772, 0.453, respectively). Furthermore, the BDI and ZCBI scores of the caregivers did not show a statistically significant difference according to whether the patient was followed up in PC services or not (p-values – 0.633, 0.786, respectively). Beck Depression Inventory score differs statistically according to the time of diagnosis (p < 0.001). Caregivers of patients with time of diagnosis more than 5 years had the highest BDI scores (p < 0.001). In addition, statistically significant differences were found between the BDI scores of caregivers according to the status of their patients after ED evaluation (discharge, hospitalization to services or intensive care unit and death). Caregivers of dying patients had higher BDI and ZCBI scores compared to other caregivers (p – 0.001) (Table 5).
A moderately statistically significant relationship was found between the caregiver’s BDI and ZCBI score (r – 0.337, p – 0.001) (Table 6).

Discussion

It was found that caregivers of PC patients have moderate to severe CB and moderate depression in this study. Additionally, there is a significant relation between ZCBI and BDI scores, indicating that CB increases depression of caregivers.
Ustaalioglu et al. evaluated CB in caregivers of cancer patients and they found that most of the caregivers had mild CB in their study. They evaluated patients who receive chemotherapy with a low performance status; therefore duration of care might be shorter than that in our patients [11]. Similarly, there are some studies that evaluated CB via ZCBI in the Turkish population. Their scores were lower than the results obtained in the present study [12–14]. It is presumed that the scores in the present study were observed to be higher because the questionnaires were done in the ED. It is known that ED visits can increase CB [15] with or without the presence of an emergency problem. Caregivers of dying patients had higher CB than others. It may be related to the duration of care, low performance status or being aware of poor prognosis.
When the risk factors of CB were evaluated in the present study, it was found that age, gender, marital status, financial status and PC follow-up had no significant effect on CB. In contrast, Karabekirollu et al. reported that male caregivers have higher CB than female caregivers [7]. Additionally, Hsu et al. detected a correlation between financial status and CB. It is found that duration of care is an important factor determining the degree of CB [16]. Similarly, Orak et al. and Yuksel et al. described a possible relation between CB and duration of care. It is suggested that CB increases along with the duration of care [13, 17]. There is need for more than one caregiver, especially concerning PC patients.
According to patient related factors, there was no statistically significant difference between low performance status detected via KPS and CB. Although there was no significant correlation between performance status and CB in the present study, it was found that pain and skin/nail changes were factors increasing CB in PC patients. Kim et al. also stated that there was no statistically significant relation between CB and patient’s performance status [6]. By contrast, it was found in two separate studies [13, 16] that there was a possible relation between low performance status and CB. These differing results may be due to diversity among patient groups in terms of diagnosis, stages, etc. It is known that KPS can be used to determine the performance status of PC patients. It may aid in revealing the risk factors of CB.
There are many studies with similar results to those of the present study, which indicate a positive correlation between CB and depression [11, 16, 18]. In Perpi¼á-Galva¼ et al.’s study, they presented a possible relation between CB and depression. They suggested that depression is the most predicted burden factor in caregivers of PC patients [19]. Additionally, Ullrich et al. reported a rate of 41% moderate or severe depression in caregivers of cancer patients [20]. Karabekirollu et al. evaluated the possible relation between CB and depression and they found that burden level could be a force determining the depression variance of caregivers (41%) [7]. Palliative care has a multidisciplinary approach and psychologists are an important member of the PC team, not only for patients but also for caregivers. Possible CB should be identified early for measures to be taken to prevent or decrease CB. Multiple factors can induce CB; therefore the PC team should reveal the source of the present obstacle such as personal (financial problems, unmet needs, etc.) and patient related situations. For example, social status was a determined factor for CB in a previous study [16]. After revealing problems and their sources, the PC team should try to solve them quickly, with the support of those who can be of help in the current situation such as a social worker, psychologist, chaplain, home care team, etc.
The present study obtained an expected result about dying patients. It was a burden factor and increased depression levels in caregivers. It is known that the PC process is not concluded with the death of the patient. Along with the primary purposes, it also aims to support families and caregivers in their stages of grief. Therefore, the PC team can work in coordination with the ED team [15]. When combined, they can support caregivers and families at the end of life in the ED.

Impact paragraph

Caregiver burden and depression are very important subjects for caregivers of PC patients. The caregivers of PC patients have a very important role in this kind of care. The determination of their burden and depression and evaluation of possible factors about them are very important. In this study, we tried to do all of them in our emergency department. We believe it is valuable research for early prevention of CB and depression.

Conclusions

According to our results, there was moderate to severe CB and moderate depression in caregivers of PC patients. In addition, a strong relation between CB and depression was observed. It is known that CB is an important matter among caregivers of PC patients. It can lead to depression, which is an undesired outcome for both patients and caregivers. Palliative care includes not only patients but also caregivers. Therefore, the role of the PC team in this process is the early detection of CB in order to prevent depression along with the detailed evaluation of possible factors leading to CB. The authors declare no conflict of interest.

References