Volume 19, Issue 2 (9-2022)
J Res Dev Nurs Midw 2022, 19(2): 59-62 |
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Sayadi L, Masoumi Fard F. Relationships between Burden of Care and Mental Health of Family Members of Hospitalized Patients with COVID-19. J Res Dev Nurs Midw 2022; 19 (2) :59-62
URL: http://nmj.goums.ac.ir/article-1-1439-en.html
URL: http://nmj.goums.ac.ir/article-1-1439-en.html
1- school of nursing & midwifery, nursing and midwifery care research center, Tehran university of medical sciences, Tehran, Iran
2- Staff Training Center, Tehran university of medical Sciences, Tehran, Iran. ,f.masomi@yahoo.com
2- Staff Training Center, Tehran university of medical Sciences, Tehran, Iran. ,
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Introduction
Throughout history, humans have faced pandemics and epidemics of infectious diseases, including coronavirus disease 2019 (COVID-19). The first case of COVID-19 in Iran was detected and confirmed in February 2018. Since then, the disease quickly spread all over the country (1). In the mild form of COVID-19, patients are usually cared for at home, but in the moderate form, patients may require hospitalization. In severe and critical forms, patients may need respiratory support, intubation, and mechanical ventilation (2, 3).
The pandemic, the high number of hospital visits, and the following admissions create many challenges for medical centers and people who care for these patients. People involved in the care of COVID-19 patients can include healthcare workers, family members, or informal caregivers (4). The family members of patients with COVID-19 are at the forefront of care delivery to these patients. Multiple responsibilities, ambiguity and concern over the patient's condition, fear of the patient's death, the need to wear personal protective equipment, observing social distancing, and emotional support of the patient put the burden of care on family members (4). The burden of care is a general term that describes the psychological, physical, social, and financial burden of care that caregivers must endure (5). In addition, caregivers themselves are exposed to the coronavirus, which threatens their health (6) and further increases the burden of care.
The negative effects of the burden of care on patients’ family members can manifest as anxiety, depression (7, 8), emotional and psychological distress, activity restrictions, reduced physical health, financial problems, and ambiguity towards the patient's condition (9). After the COVID-19 outbreak, studies began to investigate the burden of care of patient’s family members. For example, a study conducted in Italy showed that families of hospitalized patients experience psychological distress, anxiety, and stress (10). In America, families of COVID-19 patients hospitalized in the intensive care units (ICUs) experienced stress and uncertainty (11). In Iran, a study investigated the burden of care in family members of COVID-19 patients after hospital discharge and found that family members endured a moderate to severe burden of care (12, 13). However, it is necessary to conduct more studies on this field in different societies, because the burden of care can be affected by the financial, social, psychological and physical status of caregivers during the provision of care, as well as the limited access to health and support services (14).
The spread of infectious diseases such as COVID-19 creates psychological distress such as fear, anxiety, depression, and nervousness at the individual, national, and global levels (15, 16). Although psychological distress can be seen in all members of society, families of those affected by COVID-19 can experience a higher level of psychological distress (17). Considering the importance of maintaining the physical and psychological well-being of caregivers and the need to pay attention to various aspects of COVID-19, this study was conducted to determine the relationship between the burden of care and the mental health of family members of hospitalized patients with COVID-19.
Methods
This cross-sectional correlational study was conducted between November 2021 and February 2022. The study population included 84 family members of COVID-19 patients hospitalized in the Shariati Hospital affiliated with the Tehran University of Medical Sciences. Inclusion criteria were being a first-degree relative of patients with confirmed COVID-19, age of ≥18 years, hospitalization of the patient during the study period, and completion of questionnaires in full. Family members who had a history of mental illness and medication use for mental problems (through self-deceleration) as well as those who were taking care of several patients in the family at the same time, or were taking care of other patients with chronic diseases such as diabetes and dementia were excluded from the study.
No study was found that investigated the burden of care and mental health in the family of patients with infectious diseases, but according to other studies conducted on chronic diseases (18), the sample size was estimated to be 82 participants according to 90% power, a=0.05, r= 0.347, and the following formula: N = [(Zα+Zβ)/C]2 + 3.
After receiving approval from the Ethics Committee of Tehran University of Medical Sciences and obtaining permission from the hospital director, the sampling process began. Data collection was done using a demographic information form on members' and patients’ clinical information, the Depression Anxiety Stress Scales—21 (DASS-21), the Zarit Burden Interview (ZBI-22), and the 12-item General Health Questionnaire (GHQ-12). Demographic information including age, gender, hospitalization ward, oxygen usage, the severity of the disease according to the physician (moderate or severe), and length of hospital stay were retrieved from the hospital records, and information of family members including age, gender, marital status, education level, occupation, number of children, duration of care for patients per day, relationship with patient, comorbidity, and economic status was collected through self-report and completion of the questionnaire in a private room at the hospital. The necessary principles to prevent COVID-19 transmission were considered during this process.
Anxiety, stress, and depression levels were assessed using the DASS-21 scale. This scale has 21 questions, which are answered based on a 4-point Likert scale that ranges from 0 (it does not apply to me at all) to 3 (it completely applies to me). In this tool, questions 3, 5, 10, 13, 16, 17, and 21 are related to depression, questions 2, 4, 7, 9, 15, 19, and 20 are related to anxiety, and questions 18, 14, 12, 11, 8, 6, 1 are related to stress (19). The score of each subscale is multiplied by 2, and higher scores indicate more frequent symptoms. The reliability of this tool has been reported in various studies. In Iran, this tool has been psychometrically evaluated with acceptable reliability (20, 21).
The care burden of participants was determined by the ZBI-22 developed by Zerit et al. (1998). The scale has 22 questions related to personal, emotional, social, and economic pressures. Each item is scored on a 5-point Likert scale, ranging between 0 (never), 1 (rarely), 2 (sometimes), 3 (often), and 4 (almost always). The total score of this scale ranges from 0 to 88; a score of 0-20 reflects no to mild burden, a score of 21-40 indicates mild to moderate burden, a score of 41 to 60 reflects moderate to severe burden, and a score of 61-88 indicates severe burden (22). This questionnaire has already been used in Iran with acceptable reliability (23).
The general health of the participants was measured by GHQ-12, which was developed by Goldberg in the 1970s to measure mental health/mental distress. The questionnaire has been used in different societies and cultures.(24) In this questionnaire, factors such as ability to concentrate, insomnia, sense of usefulness, ability to make decisions, sense of mental pressure, inability to overcome difficulties, enjoying daily activities, ability to face problems, feeling sad and depressed, loss of self-confidence, feeling unvalued, and sense of rational happiness are measured. Six items (items 2, 3, 4, 6, 10, 12) are positive, and the other 6 items (questions 1, 5, 7, 8, 9, 11) are negative. Each item has four answers from 0 to 3. Negative answers range between not at all (score 0), rarely (score 1), usually (score 2), and more than usual (score 3), while positive items are scored oppositely. To determine the total score, which ranges from 0 to 36, scores are added together, and a higher score indicates worse mental health. This tool has been translated into Persian and its validity and reliability have been measured and reported as acceptable (25).
To determine the validity, the Persian questionnaires were given to 10 nursing faculty members, and after their approval, their reliability was checked. For testing the reliability of the DASS-21, ZBI-22, and GHQ-12, they were completed by 20 family members and their reliability was assessed by calculating the Cronbach's alpha, which was 71%, 82%, and 75% for the DASS-21, ZBI-22, and GHQ-12, respectively.
Data were analyzed by the SPSS-16 software. Qualitative and quantitative variables were summarized and reported as frequency (percentage) and mean ± standard deviation, respectively. Considering the normality of the data, correlation analysis, t-test, and chi-square were used to evaluate relationships between the variables (demographic variables and DASS-21). The relationship between each demographic variable and DASS-21 and the independent variables was assessed by logistic regression after controlling other variables in the model. The significance level of 0.05 was considered for all tests.
Results
The average age of patients was 61.73±17.37 years. The majority of patients were male (51.2%) and hospitalized in the general wards (75.6%). Also, 62.2% of the hospitalized patients had moderate disease. The mean duration of hospitalization was 12.18±7.69 days. The mean age of family members was 42.80±11.11 years, and most of them were female (65.9%) and married (73.2%). On average, family members were spending 10.21±5.792 hours caring for patients with COVID-19 (Table 1).
The mean scores of depression, anxiety, and stress in the family members of patients with COVID-19 were 16.76±7.04, 17.33±7.56, and 20.92±8.76, respectively (Table 2).
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Discussion
The present study showed that the mean score of the burden of care in the family members of patients with COVID-19 was 30.98±14.61. Half of the participants experienced a mild to moderate level of care burden. Family members with lower income reported a higher level of burden of care. Also, there was a significant relationship between stress, anxiety, depression, and the burden of care, which is consistent with the results of other studies. The results of a study aimed at investigating the care burden of adults caring for elderly people during the COVID-19 pandemic showed that 82% of caregivers had experienced a mild to moderate level of care burden (26). Results of studies conducted in Iran on the care burden of family caregivers of discharged patients with COVID-19 also showed the burden of care in caregivers (12, 27). Studies have shown that caregivers of COVID-19 patients with lower income experience more negative consequences than other caregivers (14). Family members of COVID-19 patients experience a high level of anxiety and worry about the pandemic (28), which can increase their burden of care. Also, studies conducted on the caregivers of patients with other diseases show that subjective care burden is associated with anxiety and depression (29, 30).
In this study, the mean score of mental health in COVID-19 patients was 16.92±1.95, which is in the moderate range. The results also showed a positive significant relationship between stress, anxiety, and depression of family members and GHQ-12 scores. Although mental distress and mental health disorders during the COVID-19 pandemic have been reported in the entire society (31, 32), a study conducted in Japan showed that family members of COVID-19 patients experience a higher level of mental distress in comparison with family members of patients with other diseases (17). Other studies have also shown that family members of patients with COVID-19 experience more mental health problems (33). A study in the United States found more negative outcomes such as anxiety, depression, fatigue, and sleep disturbance in the family members of COVID-19 patients compared to people who did not provide care (14). Mental distress has also been reported in nurses (34) and physicians (35), and this issue reveals the relationship between close contact with COVID-19 patients and mental health.
In our study, by adjusting the independent variables, a significant relationship was found between stress level and burden of care. The effect of mental distress and stress on the burden of care has been demonstrated in many studies. For example, a study in 2022 indicated a relationship between care burden and psychological distress among 163 caregivers of patients with chronic disease (36). In a study conducted in Iran, a positive significant relationship was found between the perceived stress and burden of care in the family members of COVID-19 patients (37). In a study in Argentina, 46% of caregivers reported depression, 68% reported care burden, and 71% reported anxiety (38). The results of a systematic review and meta-analysis showed that the subjective burden of care was one of the important risk factors of informal caregivers’ anxiety (30).
Based on the results of the present study and considering that the world is still dealing with the COVID-19 pandemic, it is necessary for medical centers to consider the caregivers of COVID-19 patients as an impact group and a priority, and apply evidence-based solutions to provide support for them and reduce their psychological distress and burden of care. In future, other studies can be conducted to investigate various interventions in reducing the care burden and stress and improving the mental health of family members of those infected with COVID-19. This study was conducted during the COVID-19 crisis when the infection rate was high, and this itself could affect the stress and mental health of family members. Vaccination and effective treatment can reduce the stress of family members and the burden of care; therefore, repeating this study in the future can clarify this issue.
Since this was a single-center study, it is recommended to conduct future studies by enrolling participants from different hospitals with a random sampling method.
Conclusion
According to the results, more than half of the family members of COVID-19 patients experience a moderate level of burden of care. There is a significant relationship between caregivers' stress level and their care burden. Therefore, it is essential to pay especial attention to the issue of stress and help reduce care burden in the family members of patients with COVID-19 in medical centers, thereby improving the quality of care to patients and reducing the health challenges in the families of these patients, especially when new variants of coronavirus are still emerging.
Acknowledgements
This research project was approved by the Nursing and Midwifery Research Center, Tehran University of Medical Sciences in 2021 (code: 1400-2-160-52916). We would like to thank all participants and those who helped us conduct this study.Funding source
Ethical statement
Conflict of interest
Author contributions
Throughout history, humans have faced pandemics and epidemics of infectious diseases, including coronavirus disease 2019 (COVID-19). The first case of COVID-19 in Iran was detected and confirmed in February 2018. Since then, the disease quickly spread all over the country (1). In the mild form of COVID-19, patients are usually cared for at home, but in the moderate form, patients may require hospitalization. In severe and critical forms, patients may need respiratory support, intubation, and mechanical ventilation (2, 3).
The pandemic, the high number of hospital visits, and the following admissions create many challenges for medical centers and people who care for these patients. People involved in the care of COVID-19 patients can include healthcare workers, family members, or informal caregivers (4). The family members of patients with COVID-19 are at the forefront of care delivery to these patients. Multiple responsibilities, ambiguity and concern over the patient's condition, fear of the patient's death, the need to wear personal protective equipment, observing social distancing, and emotional support of the patient put the burden of care on family members (4). The burden of care is a general term that describes the psychological, physical, social, and financial burden of care that caregivers must endure (5). In addition, caregivers themselves are exposed to the coronavirus, which threatens their health (6) and further increases the burden of care.
The negative effects of the burden of care on patients’ family members can manifest as anxiety, depression (7, 8), emotional and psychological distress, activity restrictions, reduced physical health, financial problems, and ambiguity towards the patient's condition (9). After the COVID-19 outbreak, studies began to investigate the burden of care of patient’s family members. For example, a study conducted in Italy showed that families of hospitalized patients experience psychological distress, anxiety, and stress (10). In America, families of COVID-19 patients hospitalized in the intensive care units (ICUs) experienced stress and uncertainty (11). In Iran, a study investigated the burden of care in family members of COVID-19 patients after hospital discharge and found that family members endured a moderate to severe burden of care (12, 13). However, it is necessary to conduct more studies on this field in different societies, because the burden of care can be affected by the financial, social, psychological and physical status of caregivers during the provision of care, as well as the limited access to health and support services (14).
The spread of infectious diseases such as COVID-19 creates psychological distress such as fear, anxiety, depression, and nervousness at the individual, national, and global levels (15, 16). Although psychological distress can be seen in all members of society, families of those affected by COVID-19 can experience a higher level of psychological distress (17). Considering the importance of maintaining the physical and psychological well-being of caregivers and the need to pay attention to various aspects of COVID-19, this study was conducted to determine the relationship between the burden of care and the mental health of family members of hospitalized patients with COVID-19.
Methods
This cross-sectional correlational study was conducted between November 2021 and February 2022. The study population included 84 family members of COVID-19 patients hospitalized in the Shariati Hospital affiliated with the Tehran University of Medical Sciences. Inclusion criteria were being a first-degree relative of patients with confirmed COVID-19, age of ≥18 years, hospitalization of the patient during the study period, and completion of questionnaires in full. Family members who had a history of mental illness and medication use for mental problems (through self-deceleration) as well as those who were taking care of several patients in the family at the same time, or were taking care of other patients with chronic diseases such as diabetes and dementia were excluded from the study.
No study was found that investigated the burden of care and mental health in the family of patients with infectious diseases, but according to other studies conducted on chronic diseases (18), the sample size was estimated to be 82 participants according to 90% power, a=0.05, r= 0.347, and the following formula: N = [(Zα+Zβ)/C]2 + 3.
After receiving approval from the Ethics Committee of Tehran University of Medical Sciences and obtaining permission from the hospital director, the sampling process began. Data collection was done using a demographic information form on members' and patients’ clinical information, the Depression Anxiety Stress Scales—21 (DASS-21), the Zarit Burden Interview (ZBI-22), and the 12-item General Health Questionnaire (GHQ-12). Demographic information including age, gender, hospitalization ward, oxygen usage, the severity of the disease according to the physician (moderate or severe), and length of hospital stay were retrieved from the hospital records, and information of family members including age, gender, marital status, education level, occupation, number of children, duration of care for patients per day, relationship with patient, comorbidity, and economic status was collected through self-report and completion of the questionnaire in a private room at the hospital. The necessary principles to prevent COVID-19 transmission were considered during this process.
Anxiety, stress, and depression levels were assessed using the DASS-21 scale. This scale has 21 questions, which are answered based on a 4-point Likert scale that ranges from 0 (it does not apply to me at all) to 3 (it completely applies to me). In this tool, questions 3, 5, 10, 13, 16, 17, and 21 are related to depression, questions 2, 4, 7, 9, 15, 19, and 20 are related to anxiety, and questions 18, 14, 12, 11, 8, 6, 1 are related to stress (19). The score of each subscale is multiplied by 2, and higher scores indicate more frequent symptoms. The reliability of this tool has been reported in various studies. In Iran, this tool has been psychometrically evaluated with acceptable reliability (20, 21).
The care burden of participants was determined by the ZBI-22 developed by Zerit et al. (1998). The scale has 22 questions related to personal, emotional, social, and economic pressures. Each item is scored on a 5-point Likert scale, ranging between 0 (never), 1 (rarely), 2 (sometimes), 3 (often), and 4 (almost always). The total score of this scale ranges from 0 to 88; a score of 0-20 reflects no to mild burden, a score of 21-40 indicates mild to moderate burden, a score of 41 to 60 reflects moderate to severe burden, and a score of 61-88 indicates severe burden (22). This questionnaire has already been used in Iran with acceptable reliability (23).
The general health of the participants was measured by GHQ-12, which was developed by Goldberg in the 1970s to measure mental health/mental distress. The questionnaire has been used in different societies and cultures.(24) In this questionnaire, factors such as ability to concentrate, insomnia, sense of usefulness, ability to make decisions, sense of mental pressure, inability to overcome difficulties, enjoying daily activities, ability to face problems, feeling sad and depressed, loss of self-confidence, feeling unvalued, and sense of rational happiness are measured. Six items (items 2, 3, 4, 6, 10, 12) are positive, and the other 6 items (questions 1, 5, 7, 8, 9, 11) are negative. Each item has four answers from 0 to 3. Negative answers range between not at all (score 0), rarely (score 1), usually (score 2), and more than usual (score 3), while positive items are scored oppositely. To determine the total score, which ranges from 0 to 36, scores are added together, and a higher score indicates worse mental health. This tool has been translated into Persian and its validity and reliability have been measured and reported as acceptable (25).
To determine the validity, the Persian questionnaires were given to 10 nursing faculty members, and after their approval, their reliability was checked. For testing the reliability of the DASS-21, ZBI-22, and GHQ-12, they were completed by 20 family members and their reliability was assessed by calculating the Cronbach's alpha, which was 71%, 82%, and 75% for the DASS-21, ZBI-22, and GHQ-12, respectively.
Data were analyzed by the SPSS-16 software. Qualitative and quantitative variables were summarized and reported as frequency (percentage) and mean ± standard deviation, respectively. Considering the normality of the data, correlation analysis, t-test, and chi-square were used to evaluate relationships between the variables (demographic variables and DASS-21). The relationship between each demographic variable and DASS-21 and the independent variables was assessed by logistic regression after controlling other variables in the model. The significance level of 0.05 was considered for all tests.
Results
The average age of patients was 61.73±17.37 years. The majority of patients were male (51.2%) and hospitalized in the general wards (75.6%). Also, 62.2% of the hospitalized patients had moderate disease. The mean duration of hospitalization was 12.18±7.69 days. The mean age of family members was 42.80±11.11 years, and most of them were female (65.9%) and married (73.2%). On average, family members were spending 10.21±5.792 hours caring for patients with COVID-19 (Table 1).
The mean scores of depression, anxiety, and stress in the family members of patients with COVID-19 were 16.76±7.04, 17.33±7.56, and 20.92±8.76, respectively (Table 2).
Discussion
The present study showed that the mean score of the burden of care in the family members of patients with COVID-19 was 30.98±14.61. Half of the participants experienced a mild to moderate level of care burden. Family members with lower income reported a higher level of burden of care. Also, there was a significant relationship between stress, anxiety, depression, and the burden of care, which is consistent with the results of other studies. The results of a study aimed at investigating the care burden of adults caring for elderly people during the COVID-19 pandemic showed that 82% of caregivers had experienced a mild to moderate level of care burden (26). Results of studies conducted in Iran on the care burden of family caregivers of discharged patients with COVID-19 also showed the burden of care in caregivers (12, 27). Studies have shown that caregivers of COVID-19 patients with lower income experience more negative consequences than other caregivers (14). Family members of COVID-19 patients experience a high level of anxiety and worry about the pandemic (28), which can increase their burden of care. Also, studies conducted on the caregivers of patients with other diseases show that subjective care burden is associated with anxiety and depression (29, 30).
In this study, the mean score of mental health in COVID-19 patients was 16.92±1.95, which is in the moderate range. The results also showed a positive significant relationship between stress, anxiety, and depression of family members and GHQ-12 scores. Although mental distress and mental health disorders during the COVID-19 pandemic have been reported in the entire society (31, 32), a study conducted in Japan showed that family members of COVID-19 patients experience a higher level of mental distress in comparison with family members of patients with other diseases (17). Other studies have also shown that family members of patients with COVID-19 experience more mental health problems (33). A study in the United States found more negative outcomes such as anxiety, depression, fatigue, and sleep disturbance in the family members of COVID-19 patients compared to people who did not provide care (14). Mental distress has also been reported in nurses (34) and physicians (35), and this issue reveals the relationship between close contact with COVID-19 patients and mental health.
In our study, by adjusting the independent variables, a significant relationship was found between stress level and burden of care. The effect of mental distress and stress on the burden of care has been demonstrated in many studies. For example, a study in 2022 indicated a relationship between care burden and psychological distress among 163 caregivers of patients with chronic disease (36). In a study conducted in Iran, a positive significant relationship was found between the perceived stress and burden of care in the family members of COVID-19 patients (37). In a study in Argentina, 46% of caregivers reported depression, 68% reported care burden, and 71% reported anxiety (38). The results of a systematic review and meta-analysis showed that the subjective burden of care was one of the important risk factors of informal caregivers’ anxiety (30).
Based on the results of the present study and considering that the world is still dealing with the COVID-19 pandemic, it is necessary for medical centers to consider the caregivers of COVID-19 patients as an impact group and a priority, and apply evidence-based solutions to provide support for them and reduce their psychological distress and burden of care. In future, other studies can be conducted to investigate various interventions in reducing the care burden and stress and improving the mental health of family members of those infected with COVID-19. This study was conducted during the COVID-19 crisis when the infection rate was high, and this itself could affect the stress and mental health of family members. Vaccination and effective treatment can reduce the stress of family members and the burden of care; therefore, repeating this study in the future can clarify this issue.
Since this was a single-center study, it is recommended to conduct future studies by enrolling participants from different hospitals with a random sampling method.
Conclusion
According to the results, more than half of the family members of COVID-19 patients experience a moderate level of burden of care. There is a significant relationship between caregivers' stress level and their care burden. Therefore, it is essential to pay especial attention to the issue of stress and help reduce care burden in the family members of patients with COVID-19 in medical centers, thereby improving the quality of care to patients and reducing the health challenges in the families of these patients, especially when new variants of coronavirus are still emerging.
Acknowledgements
This research project was approved by the Nursing and Midwifery Research Center, Tehran University of Medical Sciences in 2021 (code: 1400-2-160-52916). We would like to thank all participants and those who helped us conduct this study.
Funding source
This study received financial support from the Tehran University of Medical Sciences, Iran.
Ethical statement
The present study was conducted after receiving approval from the Ethics Committee of Qazvin University of Medical Sciences (code: IR.QUMS.REC.1396.496). Informed consent was also from participants after ensuring the confidentiality of their information.
Conflict of interest
The authors declare that there is no conflict of interest.
Author contributions
Leila Sayadi designed the study, analyzed the results, and wrote the paper. Faranak Masoumi Fard collected the data and wrote the paper. Both authors revised and approved the final manuscript.
Type of study: Original Article |
Subject:
Psychology and Psychiatry
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