1. Background
Recently, people's anxiety about their health has grown as a result of the information about COVID-19 pandemic obtained from social networks, misinterpretation of seasonal allergy symptoms similar to symptoms of COVID-19, and perception of risks to the health of relatives and loved ones. Health anxiety is a spectrum that includes, on the one hand, mild concerns about getting sick and health and, on the other hand, extreme fears about health and physical symptoms (1). Health anxiety has increased significantly in recent decades, and patients with health anxiety use health care and services 41 - 78% more than patients with various medical conditions (2). Referrals to medical centers increased during the COVID-19 pandemic due to anxiety and unreasonable concern about physical symptoms and fear of contracting this disease, which caused fatigue in medical personnel, reduced the provision of efficient healthcare services to patients in need, and increased the risk of infection with COVID-19 (3). Continuous and excessive health anxiety causes disturbances in family and social relationships as well as increases the costs of medical care (4). Informal caregivers are those who provide unpaid care to their friends and family with various illnesses or disabilities. Therefore, they are essential components in patient care (5). Caregivers are negatively affected by living with patients who suffer from illnesses and their complications, managing their care and emotional reactions, and treating them (6). Moreover, distress caused by quarantine during the COVID-19 pandemic (e.g., fear of infection, lack of sufficient information and resources, long-term isolation, financial problems, frustration, impatience, and labeling of the disease by people) increased the pressure and mental health problems (7).
Caregiver burden refers to the level of caregivers' understanding of their physical or mental health and financial and social life as the suffering caused by caring for their relatives (8). Due to the nature of caregiving, caregivers are at risk of a range of physical disorders such as fatigue, difficulty in sleeping, weak immune system function, cardiovascular diseases, and a 63% increase in mortality (9). High caregiver burden is associated with consequences such as patient abandonment, insufficient patient care, reduced quality of life, increased depression, insufficient attention to one's health, and feelings of personal isolation (10). Caregiver burden is a problematic issue for the family and the patient, causing pain and suffering for the caregiver and the patient since it is hidden and not recognized as a disease (11).
The results of the study by Saeedi et al. showed that employees working in health centers in Iran had high health anxiety (12). The results of the study by Benke et al. indicated that individuals with high levels of health anxiety were prone to fearful mental imagery of contracting COVID-19, which might have been crucial factor contributing to the exacerbation and chronicity of excessive health anxiety in times of a pandemic (13). The findings from the study by Nakamoto et al. demonstrated that more than half of the caregivers reported an increased caregiver burden, and that the increased caregiver burden was associated with SPD during the pandemic (14).
Kazan Kizilkurt et al. revealed that using social networks, following the news of the COVID-19 pandemic, self-perception, and the level of hopelessness were the main predictors of health anxiety (15). Cohen et al. also showed that the increase in caregiver burden due to COVID-19 was associated with an increase in the intensity of care, and that many caregivers experienced an increased caregiver burden and intensity since the outbreak of COVID-19 (16). Since informal caregivers are in direct contact with patients with COVID-19, are aware of their suffering as well as the signs and symptoms of their disease, and do not have enough information and skills to care for them, they experience a strong fear of contracting the disease and varying degrees of health anxiety. This may create caregiver burden, prevent adequate patient care, and place financial burden on the family and health system. The relationship between health anxiety and different subscales of caregiver burden has not received research attention so far. Accordingly, determining the relationship between health anxiety as one of the complications of COVID-19 and caregiver burden and its different subscales as well as identifying the factors affecting these two parameters may positively contribute to developing strategies to deal with the consequences of COVID-19 for caregivers.
2. Objectives
This study aimed to examine the relationship between health anxiety and care burden in informal caregivers of patients with COVID-19 in 2021.
3. Methods
3.1. Study Design and Setting
In this cross-sectional and correlational study, the convenient sampling method was employed to select 340 informal caregivers of patients with COVID-19 who were discharged during the last three weeks of hospitalization in Vasei Hospital in Sabzevar City, Iran, between July 23 and November 6, 2021.
3.2. Participants
The sample size of this study was calculated based on a study by Mousavi et al. (17) in which the prevalence of health anxiety was reported as 33.7%. Therefore, the sample size was determined to be 374 based on the following formula with a confidence factor of 95%, an error rate of 0.05, and a loss of 10%:
The inclusion criteria were willingness to participate in the study, reading and writing literacy, not having an active COVID-19, not having mental disorders, not taking psychiatric drugs, not being addicted, having access to a smartphone, and not being a professional caregiver (i.e., not working as a health and medical personnel). The exclusion criteria, on the other hand, were unwillingness to participate in the study, non-cooperation in completing the questionnaires, and completion of the questionnaires randomly or inappropriately.
3.3. Measurements
Data collection tools were: (1) A demographic information questionnaire; (2) Salkoviskis's short health anxiety inventory (SHAI); and (3) Novak and Guest's Caregiver Burden Inventory (CBI).
(1) The demographic questionnaire included general information such as sexuality, marital status, educational level, occupational status, relation to the patient, living with the patient, access to an alternative caregiver, affliction with chronic diseases, insurance status, parental status, age, hours of care per week, the average hours following the news on COVID-19 during the last two weeks, and monthly income.
(2) Salkoviskis's short health anxiety inventory (SHAI) included 18 questions about contracting the disease (questions 5, 6, 8, 9, 11, and 12), general health concerns (questions 1, 2, 3, 4, 7, 10, and 14), and consequences of the disease (questions 13, 15, 16, 17, and 18) with each item including four options, and each option including an individual’s description of the components of health and disease in the form of a declarative sentence. The participants had to choose one sentence offering the best description for them. Each item was scored from 0 to 3. Options A, B, C, and D had scores of 0, 1, 2, and 3, respectively. The overall score was between 0 and 54, so a higher score was indicative of a higher health anxiety (18). The validity and reliability of the Persian version of the inventory were already measured by Nargesi et al. and its Cronbach's alpha coefficient was reported as 75% (19). The reliability of the inventory was 85% based on Cronbach's alpha in this study.
(3) Novak and Guest's Caregiver Burden Inventory (CBI) contains 24 items that examine five subscales (i.e., time-dependent care burden/questions 1 - 5, developmental care burden/questions 6 - 10, physical care burden/questions 11 - 14, social care burden/questions 15 - 19, and emotional care burden/questions 20 - 24) (20). Caregivers' responses were measured based on a 5-point Likert scale (strongly disagree to strongly agree), so that the participants selected one of the responses of strongly disagree (score 1), disagree (score 2), neutral (score 3), agree (score 4), and strongly agree (score 5) to answer each question. Accordingly, the scores of the inventory ranged from 24 to 120, with scores of 24 to 47 indicating mild caregiver burden, 48 to 71 indicating moderate caregiver burden, 72 to 95 indicating severe caregiver burden, and 96 to 120 indicating very severe caregiver burden (21). The validity and reliability of the Persian version of the inventory were already measured by Shafiezadeh et al. Cronbach's alpha of the subscales was 93%, and the test-retest reliability coefficient of the intracluster correlation index was 96% at a two-week interval (22). The reliability of the inventory was 91% based on Cronbach's alpha coefficient in this study.
The researcher attended the Medical Records Unit of Vasei Hospital in Sabzevar and received the list of the names and contact numbers of patients who were discharged from the hospital in the last three weeks after approving the research project and receiving the code of ethics from the Ethics Committee of Sabzevar University of Medical Sciences. The caregivers of the patients were identified and informed of the study procedures and objectives in phone conversation. The links of the online questionnaires were shred with the procedures through common internal and external messengers (Soroush, WhatsApp, and Telegram), and they were asked to complete them honestly and carefully if they already met the inclusion criteria. Participants were provided with a contact number to contact the research team for receiving guidance to sort out possible problems while completing the questionnaires, and were also given one week to complete the questionnaires. Participants who failed to complete the questionnaires were contacted and those unwilling to continue cooperation were excluded from the study after one-week deadline.
3.4. Statistical Analysis
The collected data were analyzed in SPSS 22 software using descriptive statistics (e.g., mean, standard deviation, and frequency distribution of variables) and tests (e.g., t-test, one-way ANOVA, Pearson's correlation, and linear regression). The normal distribution of the data was checked performing the Kolmogorov-Smirnov test. The significance level in the tests was P ≤ 0.05.
3.5. Ethical Considerations
The present study was approved by the Ethics Committee of Sabzevar University of Medical Sciences (IR.MEDSAB.REC.1400.062). All necessary permissions for conducting the research were obtained from the relevant administrators, and all methods were performed in accordance with the relevant guidelines and regulations. Then the patients were provided with information about voluntary participation in the study and the possibility of exclusion from the study in case of unwillingness to continue cooperation, and were assured of the confidentiality of the information.
4. Results
The data of 340 caregivers were analyzed, and 34 questionnaires were excluded due to missing data. Out of 340 caregivers, 234 (68.8%) were female, and 102 (31.2%) were male. Most of the caregivers [i.e., 182 (53.5%)] were single, most of them [i.e., 193 (56.8%)] had degrees higher than a high-school diploma, most of them [i.e., 165 (48.5%)] were unemployed, and 94 (27.6%) of them were children of patients. The mean age of the caregivers was 31.5 ± 10.67. According to our results, the caregiver burden decreased with an increase in education level (P = 0.022) (Table 1).
Variables | No. (%) | Mean ± SD | |
---|---|---|---|
Caregiver Burden | Health Anxiety | ||
Sexuality | |||
Female | 234 (68.8) | 69.89 ± 14.48 | 16.50 ± 7.98 |
Male | 106 (31.2) | 69.36 ± 15.89 | 15.62 ± 9.08 |
P-value | 0.768 | 0.395 | |
Marital status | |||
Married | 158 (46.5) | 69.86 ± 15.55 | 16.27 ± 8.68 |
Single | 182 (53.5) | 69.61 ± 14.38 | 16.18 ± 8.05 |
P-value | 0.877 | 0.921 | |
Educational level | |||
Elementary | 16 (4.7) | 70.31 ± 15.41 | 12.94 ± 7.61 |
Middle school | 33 (9.7) | 70.06 ± 12.44 | 18.12 ± 8.71 |
Diploma | 98 (28.8) | 72.89 ± 15.18 | 17.28 ± 8.54 |
Above diploma | 193 (56.8) | 67.67 ± 14.86 | 15.64 ± 8.14 |
P-value | 0.022 | 0.081 | |
Occupational status | |||
Retired | 20 (5.9) | 68.25 ± 9.36 | 18.05 ± 8.61 |
Employer | 155 (45.6) | 68.79 ± 16.03 | 15.49 ± 8.58 |
Unemployed | 193 (48.5) | 70.78 ± 14.36 | 16.70 ± 8.05 |
P-value | 0.447 | 0.263 | |
Relation to the patient | |||
Parent | 64 (18.8) | 68.97 ± 13.33 | 16.34 ± 7.60 |
Son / Daughter | 94 (27.6) | 69.10 ± 16.64 | 16.68 ± 9.00 |
Brother | 15 (4.4) | 71.13 ± 13.32 | 15.40 ± 6.48 |
Sister | 21 (6.2) | 69.00 ± 17.25 | 15.00 ± 7.19 |
Spouse | 52 (15.3) | 69.79 ± 15.81 | 15.35 ± 9.73 |
Others | 94 (27.6) | 70.77 ± 13.53 | 16.57 ± 7.92 |
P-value | 0.965 | 0.898 | |
Living with patient | |||
Yes | 190 (55.9) | 70.00 ± 15.51 | 16.31 ± 8.64 |
No | 150 (44.1) | 69.38 ± 14.17 | 16.12 ± 7.97 |
P-value | 0.701 | 0.838 | |
Access to alternative caregivers | |||
Yes | 208 (61.2) | 69.29 ± 15.28 | 16.84 ± 8.42 |
No | 132 (38.8) | 70.42 ± 14.35 | 15.25 ± 8.13 |
P-value | 0.491 | 0.084 | |
Having a chronic disease | |||
Yes | 81 (23.8) | 72.27 ± 15.46 | 16.83 ± 8.45 |
No | 259 (76.2) | 68.93 ± 14.68 | 16.03 ± 8.31 |
P-value | 0.088 | 0.461 | |
Having insurance | |||
Yes | 283 (83.2) | 69.53 ± 15.06 | 16.03 ± 8.13 |
No | 57 (16.8) | 70.68 ± 14.28 | 17.18 ± 9.31 |
P-value | 0.584 | 0.391 | |
Being a parent | |||
Yes | 129 (37.9) | 69.28 ± 15.48 | 15.71 ± 8.63 |
No | 211 (62.1) | 70.00 ± 14.59 | 16.54 ± 8.15 |
P-value | 0.671 | 0.378 |
Examining the Relationship Between Caregiver Burden and Health Anxiety Using Qualitative Variables in Informal Caregivers of Patients with COVID-19
The mean total caregiver burden was 69.72 ± 14.91, the time-dependent care burden with a mean of 16.8 ± 4.06 had the highest score, and physical care burden with a mean of 11.9 ± 3.46 had the lowest score among other subscales of caregiver burden. The mean total health anxiety was 16.22 ± 8.24, the total health concern with a mean of 7.09 ± 3.61 had the highest score, and contracting the disease with a mean of 4.47 ± 3.35 had the lowest score among other subscales of health anxiety (Table 2).
Variables | Mean ± SD | Min | Max |
---|---|---|---|
Time-dependence burden | 16.8 ± 4.06 | 5 | 25 |
Developmental burden | 14.9 ± 4.07 | 5 | 25 |
Physical burden | 11.9 ± 3.46 | 4 | 20 |
Social burden | 12.22 ± 3.97 | 0 | 25 |
Emotional burden | 13.93 ± 4.9 | 5 | 25 |
Total Caregiver burden | 69.72 ± 14.91 | 24 | 120 |
General health concerns | 7.09 ± 3.61 | 0 | 21 |
Contracting the disease | 4.47 ± 3.35 | 0 | 18 |
Consequences of the disease | 4.66 ± 2.73 | 0 | 15 |
Total health anxiety | 16.22 ± 8.24 | 0 | 54 |
Mean and Standard Deviation of Caregiver Burden and Health Anxiety and Their Subscales in Informal Caregivers of Patients with COVID-19
According to results of Pearson's test, there was an inverse correlation between income level with health anxiety (P = 0.007) and caregiver burden (P = 0.162) and age with health anxiety (P = 0.457). Furthermore, hours of care was found to positively correlate with caregiver burden (P = 0.060) and health anxiety (P = 0.301), and average Hour of Tracking COVID-19 News was detected to correlate with caregiver burden (P = 0.074) and health anxiety (P = 0.304) (Table 3).
Variables | Total Mean of Caregiver Burden | Total Mean of Health Anxiety |
---|---|---|
Age | ||
Pearson correlation coefficient | 0.023 | -0.040 |
P-value | 0.668 | 0.457 |
Hours of care per week | ||
Pearson correlation coefficient | 0.102 | 0.056 |
P-value | 0.060 | 0.301 |
Average hour of tracking COVID-19 news (last two weeks) | ||
Pearson correlation coefficient | 0.097 | 0.056 |
P-value | 0.074 | 0.304 |
Income level (monthly) | ||
Pearson correlation coefficient | - 0.080 | -0.152 |
P-value | 0.162 | 0.007 |
Investigating the Relationship of Quantitative Variables with Caregiving Burden and Health Anxiety in Informal Caregivers of Patients with COVID-19
The results of Pearson's test also revealed a positive correlation of 0.376 between caregiver burden and health anxiety (P < 0.001), and showed a significant positive correlation between the subscales of caregiver burden and health anxiety (Table 4).
CBS | HAS | |||
---|---|---|---|---|
General Health Concerns | Contracting the Disease | Consequences of the Disease | Total Health Anxiety | |
Time-dependence burden | 0.182 b | 0.140 b | 0.114 a | 0.210 b |
Developmental burden | 0.265 b | 0.295 b | 0.221 b | 0.185 b |
Physical burden | 0.317 b | 0.300 b | 0.284 b | 0.243 b |
Social burden | 0.361 b | 0.306 b | 0.347 b | 0.279 b |
Emotional burden | 0.330 b | 0.283 b | 0.304 b | 0.267 b |
Total caregiver burden | 0.308 b | 0.329 b | 0.338 b | 0.376 b |
Correlation of Caregiver Burden and Its Different Subscales with Health Anxiety and its Subscales in Informal Caregivers of Patients with COVID-19
Among all demographic variables, according to the results of regression model, income and access to an alternative caregiver predicted 4.5% of health anxiety (P = 0.001), and income and education level predicted 5.7% of care burden (P = 0.000) (Table 5).
Main and Effective Variables | Beta | P | R2 | Adjusted R2 | Adjusted F | P |
---|---|---|---|---|---|---|
Health anxiety | 0.054 | 0.045 | 5.813 | 0.001 | ||
Income level | -0.351 | 0.001 | ||||
Access to alternative caregivers | -1.804 | 0.069 | ||||
Caregiver burden | 0.066 | 0.057 | 7.180 | 0.000 | ||
Income level | -0.326 | 0.082 | ||||
Educational level | -2.199 | 0.027 |
Results of Regression Model to Predict Health Anxiety and Caregiver Burden in Informal Caregivers of Patients with COVID-19
5. Discussion
Informal caregivers faced numerous physical, psychological, and social challenges during the COVID-19 pandemic due to a lack of adequate support for them as well as concerns over their health and over that of their patients (23). This study aimed to examine the relationship between health anxiety and caregiver burden in informal caregivers of patients with COVID-19.
Our results showed that most caregivers were females (24-26), indicating the key role played by females in caregiving in most societies, which were line with the results of other studies. Iranian females, in addition to doing housework, take care of children, adults, and patients due to the dominant culture of society.
Among the subscales of caregiver burden, time-dependent care burden received the highest score, which was consistent with the findings from other studies on caregivers of patients with COVID-19 (27) and other patients (28, 29). This subscale reflects the time caregivers spend to care for patients. Caregivers have to spend considerable time since patients depend on them to manage treatment, do household choirs, and perform social activities.
According to our study results, caregivers experienced a moderate caregiver burden, which was consistent with the findings from the studies by MacLeod et al. in America (30) and Mirzaei et al. in Iran (31) but was inconsistent with the results of the study by Noguchi et al. in Japan (32). This inconsistency may have been attributed to the different types of the disease and study as well as the support, training, and equipment that the health systems of the given countries provided to caregivers.
Our results suggested that the caregiver burden decreased with an increase in the education level, which was consistent with the findings from the studies by Akkuş et al. (33) and Eskin et al. (34) on caregivers of patients with cancer. A higher education level is associated with an increased awareness about the disease and with the required measures adopted for delivering proper care, thus reducing the caregiver burden.
The mean health anxiety score of the caregivers was 16.22 in this study. This score for ordinary people was 15.1 (35) during COVID-19 pandemic and 10 - 11 (36) before it. The results showed that the health anxiety score increased in the people with a close encounter with this disease. The results also indicated that health anxiety decreased as income increased, which was consistent with the results of studies by Chen et al. (37) and Lou et al. (38). This may have been attributed to the caregivers' easier access to expensive facilities, equipment, and drugs needed to treat and support patients.
According to our study results, health anxiety increased as the caregiver burden increased. In a study by Safaeian et al. it was found that greater caregiver burden was associated with increased anxiety in caregivers of cancer patients (39). In a study on caregivers of individuals aged under 18 years, moreover, Russell demonstrated that a great caregiver burden was associated with increased general anxiety (7). A heavy caregiver burden reduces caregivers’ ability to effectively deal with the problems and pressures caused by care and, consequently, increases the stress and anxiety about their health and their patients.
The outbreak of COVID-19 has led to adverse economic, social, and health consequences in different countries (3). The results of the present study showed that physical care burden had the lowest score among other dimensions of care burden, which was inconsistent with the results of studies by Senmar et al. (40) and Sharma et al. (41) suggesting that caregivers bore enormous psychological and physical burden. The inconsistency may have been due to the fact that very limited time is needed to care for patients with COVID-19, while a great deal of time and even years are required to care for dialysis patients. In addition, strong family affection among Iranian families encourages the caregivers to do their best to take care of the patient, and, therefore, they are less likely to report their physical burden. The results of the study showed that female participants carried a greater care burden than male ones, but the difference was not statistically significant, which was not consistent with the results of the studies by Mirzaei et al. (31) and Rahimi et al. (42). This inconsistency may have been attributable to the fact that majority of the participants in our study were single females and did not have additional social responsibilities such as serving the husband and children.
5.1. Limitations
This study faced some limitations, including non-cooperation of some caregivers, return of incomplete questionnaires by some caregivers, selection of a medical center for sampling, and adoption of convenient sampling. Therefore, it was recommended that future studies should be conducted in several treatment centers by adopting random sampling method.
5.2. Conclusions
In sum, informal caregivers faced numerous physical, psychological, and social challenges during the COVID-19 pandemic due to a lack of enough knowledge of patient care, which was found to place a heavy caregiver burden on them and increase their health anxiety. As the result, the general health of caregivers and the effective care of patients were affected. It was also determined that the health of informal caregivers was an important health issue, and that the caregivers were in need of support from health organizations, society, and family members.