Investigating the burden of disease dimensions (time-dependent, developmental, physical, social and emotional) among family caregivers with COVID-19 patients in Iran

The coronavirus disease 2019 (Covid-19) is a significant global pandemic pathogen that was first identified in Dec 2019 in Wuhan, China., and it quickly developed into a serious public health challenge with a strong likelihood of transmission [1]. Iran (the Islamic Republic of) is one of the most affected countries by COVID-19 and the first confirmed cases of COVID-19 in Iran were reported on February 19, 2020 [2‐4].Since then, COVID-19 has spread rapidly across the country. Until 3 January 2020 to 29 April 2022, the Iranian Ministry of Health and Medical Education has reported 7,219,433 confirmed COVID-19 cases and 141,041 COVID-19-related deaths in Iran [5].Kerman Province, located in the southeast of the country, is the largest province of Iran, with a population of about 3 million people. Kerman province is a kind of industrial, cultural, political, academic-scientific, religious and other indicators among the provinces of the southeastern region of the Iran country [6]. The first two cases of COVID-19 in Kerman were identified in early March 2020 [7]. During the following months, COVID-19-related hospitalized cases increased more to 40,765 and COVID-19-related deaths reached 5,633 in the province [5].

The abrupt emergence of the disease can have a significant impact on someone’s mental well-being lth and restrictive policies such as quarantine, isolation, and social distancing, have an impact on the psychological well-being of people as well as emotional responses to the pandemic [3, 8, 9]. Covid-19 disease and its consequences inflict financial concerns and diminish the psychological health of people [10, 11]. The coronavirus disease has the potential to impair a patient's family and social interactions, and it not only affects patients but also caregivers [12, 13]. The possibly devastating consequences of the pandemic, as well as the limits imposed by disease control strategies, predisposed the community to substantial mental health difficulties [14]. many worries often emerge in the pandemic disasters, such as the constant need for self-protection, changes in the regular daily schedule, unexpected suspension of activities outside the home, and the wearing of masks that make it difficult to identify human faces [15]. Furthermore, when the number of individuals living together in the same place increases problems with social relations and emotionally charged reactions occur most frequently. These incidences may lead to the sudden onset of psychological symptoms in sensitive patients [16, 17].

Caregivers are persons who are mostly engaged in a patient’s care, adaptation and disease management during the treatment and recovery of illness [18]. Family caregivers provide a critical contribution to the medical and mental treatment of vulnerable patients [19]. Caregivers face constant responsibilities, such as providing personal, health, and social care to family, which can be physically and emotionally exhausting, resulting in a considerable stress burden [20]. In comparison to other caregivers, the caregivers of patients with covid-19 experience more excessive obstacles due to limited available training and resources, as well as a lack of information and standard care recommendations relating to this novel disease [18, 19]. Most family caregivers in addition to the caregiving role have other responsibilities such as their occupation accountability, housework childcare and regarding schools closing have responsibilities towards their children’s learning during the Covid-19 pandemic. They must also attempt to keep themselves and other household individuals against viral transmission, which is more complex to handle than caring for someone with other diseases or in other circumstances [20, 21]. The process of transition from a healthcare center to home care places a substantial burden on the family [22].

There is an objective and a subjective aspect to a patient's care; Objective care can be defined as the amount of time and cost spent on caring, considering economic, familial, and social costs. Subjective care burden referred to the caregiver's understanding of the care burden that encompasses psychological, emotional, and behavioural issues induced by the disease [18]. Studies suggest that home-based caregiving affects the care provider’s quality of life and satisfaction. Therefore, the burden of disease assessment on the patient's family or caregivers is essential to prepare facilities and support them [23]. However, to the best of our knowledge, no detailed study on the burden of disease among family caregivers with Covid-19 patients has been conducted to date. This study aimed to investigate the burden of disease among family caregivers with Covid-19 patients in southeast Iran. This study suggests to healthcare managers, implement suitable plans to assist caregivers and those activities are taken to decrease the burden of disease of caregivers of Covid-19 patients.

Of all the 954 participants, 314 were Male (32.9%) and 640 were female (67.1%). Of 954 caregivers, 699 (73.3%) were married and 255 (26.7%) were single. The level of education of the majority of caregivers 335 (35.1%) was a bachelor's academic degree. Other participants' demographic characteristics are displayed in Table 1.

The results showed that the mean and standard deviation of FCB was 2.61±0.6 and the severity of this burden was at a moderate level. The results of our study showed among FCB domains the mean score of the time-dependent caregiver burden domain with a mean score of 3.00 ± 0.8 was at a burden high level and the Physical caregiver burden domain with a mean score of 2.26 ± 0.9 was at a burden Lowe level, shown in Table 2.

The T-test revealed a statistically significant difference in the mean scores of FCB (P < 0.001) in terms of gender. The results base on mean ranks demonstrated that females had more care burden in comparison with males, as shown in Table 3. The T-test revealed a statistically significant difference in the mean score of FCB in terms of participants' employment status (P < 0.001), the results base on mean ranks showed the employed caregiver 'had more care burden in comparison with the unemployed caregiver, shown in Table 3.

The ANOVA test revealed a statistically significant difference in the mean score of FCB in terms of duration of treatment (P < 0.00). Therefore, the base of mean ranks the caregivers with the duration of treatment Up 14 Days for patients are more care burden. The ANOVA test showed a statistically significant difference in the mean score of FCB in terms of age (P < 0.00). According to the mean values of the ranks, the rate of care burden is higher in caregivers above 40, as shown in Table- 4. There was no statistically significant difference between other demographic characteristics of participants and dimensions of FCB.

The multivariable linear regression model showed demographic variables of caregivers included (female, married, employed, elderly, low income and poor education) had a beneficial influence on FCB. In addition, the multivariable linear regression model demonstrated that increasing the duration of treatment had a positive impact on caregivers, as Shown in Table 5.

Family caregivers experience various challenges because of restricted access to alternative caregiving resources and worries for their loved ones' physical and mental well-being [19]. The present study was designed to investigate the caregiver burden among caregivers of Covid-19 patients admitted and discharged from the three treatment-educational hospitals as the main treatment centers for Covid-19.

The findings of the study demonstrated that the mean score of care burden in participants was at a moderate level. This result was consistent with the study of [18] in Iran and the study of [25] In the United State but inconsistent with the study of [26] in Japan and the study of turkey [27]. The reason for this difference can include differences in the type of study, the type of illness of the individual in the family, the underlying disease of the patient in the family, differences in the instrument, the study setting and the difference in the educational system of countries at the community level. Radio and Television of Iran by creating appropriate training channels for caregivers with Covid-19 inpatients and outpatients provides the necessary training during the day by various experts in various fields of medical sciences, especially clinical and general psychologists that can reduce the FCB.

According to the findings of this study, among the five domains of FCB, time-dependent burden received the highest score among caregivers compared to the other domains. A search through available databases did not reveal a study examining the burden of disease in family caregivers of Covid-19 patients, although there were studies on the burden of disease of caregivers in other diseases including studies [28, 29]. This domain represents the length of time caregivers devote each day caring for their patients. It seems that this result relies on the significant dependency of Covid-19 patients on taking drugs and their requirements for medical attention. Furthermore, owing to the scarcity of home care facilities in developing countries such as Iran, patients must seek treatment at clinics or public health centers. As a result, caregivers expend a significant amount of time.

The findings of the present research demonstrated that among five domains of FCB, physical caregiver burden in comparison to other aspects scored the lowest level. This result was inconsistent with the studies of [30‐32]. These studies revealed that caregivers are exposed to a considerable degree of physical and mental pressure when caring for a patient. The reason for the discrepancy in this study could be that dialysis patients need several years of care, while covid-19 patients care for much less time. In addition, Iranian families at our place of study are at a high level in terms of emotionality and friendliness. Due to the nature of the disease and the high mortality rate, patient caregivers make every effort to care for the patient and complain less about the physical burden.

The results showed a statistically significant difference in the mean scores of FCB in terms of gender. The results based on mean ranks showed that females had more care burden in comparison with males. This result was consistent with the studies of [18, 19] in Iran country. This concern is directly associated with the Iranian socio-cultural context, in which the responsibility of child care, the older member, members with disabilities and the ill person is frequently integrated with homemakers and regarded as a part of housekeeping. Another reason for discussing this result is that in our study the majority of the family caregivers of Covid-19 patients were women. A study of Muslim women in Turkey found that women were less likely to become pregnant during the Covid-19 pandemic. This could be due to the extra role of women and the greater workload in the family during this period [33].

The finding revealed a statistically significant difference in the mean score of FCB in terms of participant’s employment status, the results based on mean ranks showed the employed caregiver had more care burden in comparison with an unemployed caregiver. This result was consistent with the studies of [19, 34, 35]. This finding is not unexpected because in Iranian culture, the patient's family is expected to offer financial assistance, and if the patient has a poor income, the caregiver will be required to spend more for patient care, putting a heavier burden on the caregiver. As a result, to offer appropriate care for Covid-19 patients, it is recommended to develop approaches to supply and provide funding assistance to caregivers.

The results of this study demonstrated a statistically significant difference in the mean score of FCB in terms of duration of treatment. Therefore, the base of mean ranks the caregivers with the duration of treatment up 14 days for patient are more care burden. This result was consistent with the studies [36, 37]. This finding is not unexpected because family caregivers are frequently the fathers or mothers, spouses and other members who have the greatest interaction with the patient during the curing process and who frequently suffer from emotional issues such as worry, depression, sadness, disappointment, anger, isolation, fear, and anxiety. Therefore, due to the unknown nature of the disease, the longer course of the Covid-19 disease, the patient's family will experience a more caring burden [17, 38].

The results of this study demonstrated a statistically significant difference in the mean score of FCB in terms of age. According to the mean values of the ranks, the rate of care burden is higher in caregivers above 40. This result was consistent with the studies [39, 40]. Caregiving roles and responsibilities have increased for all family caregivers during the pandemic, older caregiver appears to be more distressed by these shifts in care for their patient’s Covid-19. On the other hand, most people over the age of 40 usually have an underlying disease and need to take care of themselves, caring for another patient may sometimes be difficult, and impossible for them therefore these caregivers may experience more care burden.

Based on the findings, it is critical to pay more consideration to the difficulties and demands of Covid-19 patients' home caregivers. Health-care managers should give patients’ relatives enough awareness and financial assistance. There is also a need to establish programs and actions to alleviate the care burden on Covid-19 patients' family caregivers. Furthermore, society's emotional environment should be kind to patients and families to develop compassion and support patient care at home. It is recommended that factors such as quality of life, perceived social support, and disturbances like depression, fear, and anxiety should be explored in further studies within this population of caregivers during the covi19 pandemic.