Relationship between Resilience and Caregiver Burden Among Home Caregivers of COVID-19 Patients

Abstract

This study examined caregiver burden among home caregivers of COVID-19 patients and its relationship to resilience. This cross-sectional correlational study was conducted in Mashhad, Iran, in 2020. The sample consisted of 220 family caregivers of COVID-19 patients. The data collection tools included: demographic characteristics, Novak and Guest Caregiver Burden Inventory, and Connor-Davidson Resilience Scale. Data were analyzed with descriptive statistics and correlation test in SPSS v25. The mean score of caregiver burden was 76.85±16.25. In total, 4.5% experienced mild caregiver burden, 31.4% moderate caregiver burden, 50.9% severe caregiver burden, and 13.2% very severe caregiver burden. The mean score of resilience was 62.98±14.06. A significant and inverse relationship was observed between caregiver burden and resilience (p < 0.05, r = -0.46). Family caregivers of COVID-19 patients experienced a significant level of caregiver burden, and it was lower in caregivers with higher levels of resilience. Further studies are recommended in this regard. The use of procedure and training that can improve the resilience of caregivers is recommended to nurses, especially home care nurses.

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On March 11, 2020, the World Health Organization (WHO) declared the novel coronavirus disease 2019 (COVID-19) to be a pandemic (Serrano-Ripoll et al., 2020). Due to the increase in the number of referrals during the pandemic, the healthcare systems discharged patients soon after they passed the acute stage of the disease. Providing care for this group of patients was then entrusted to an informal caregiver, often a family member at home. Caring for and providing support to disabled and dependent patients at home poses many challenges for families (Atashi & Nejatian, 2020). The impact of crises on families may vary and depends on the length of the disease, previous challenges, and each family's response (Barr et al., 2022).

The ability of caregivers to cope with the physical and psychological pressures of caring can depend on their resilience. Resilience refers to one's capacity to bounce back from difficult life events and ability to recover oneself. This, in turn, leads to one's success when facing a stressful or traumatic event, despite experiencing extreme distress, and an increase in patients' and their families' social, economic, and welfare performances (Karimirad et al., 2018; Sánchez-Teruel et al., 2022). Resilience in caregivers refers to a dynamic process, wherein they display positive adaptation when facing bitter and unpleasant experiences, and is defined as the skills, features, and capacities that enable them to adapt to hardships, problems, and challenges (Zauszniewski et al., 2015). Resilience can lead to one's ability to recover from distress and adapt to stressful events so the sequela caused by the distress does not occur (Fajardo Ramos et al., 2020). It is also associated with the development of adaptive behaviors with the external environment, by which one bounces back and recovers after the elimination of stressors (Karimirad et al., 2018).

Despite the positive effects of resilience, several factors, such as caregiver burden, family dysfunction, stigma, and patient dependence, may have negative impacts on caregiver resilience (Zauszniewski et al., 2015). Scott (2013) examined the relationship between resilience and caregiver burden. Informal caregivers with higher resilience scores experienced lower levels of caregiver burden. Caregiver burden is defined as the physical, psychological, and social distresses of caregivers due to providing care to their patients, which in turn causes many problems such as anxiety, burnout, and depression (Liu et al., 2020). A caregiver is any individual who is most involved in caring for a patient during the period of disease or disability. In this regard, family members, as the most important caregivers, provide a broad range of assistance for an adult with a chronic or disabling condition. Hence, they experience significant levels of caregiver burden (Sherman, 2019). Mirzaei et al. (2020) reported the caregiver burden scores in family caregivers of outpatients and inpatients to be 83.2% and 80.9%, respectively, indicating the severity of the caregiver burden for COVID-19 patients (Mirzaei et al., 2020). Caregiver burden is one of the factors to consider in increasing the quality of life of caregivers and improving the quality of patient care, which in turn is associated with patient recovery (Cengiz et al., 2021). Due to the increasing number of COVID-19 patients, the threat to the health of family caregivers and the lack of addressing these important issues by other Iranian researchers, we observed a gap regarding resilience and caregiver burden among family caregivers of COVID-19 patients. Therefore, this study was conducted to examine the relationship between resilience and caregiver burden among home caregivers of COVID-19 patients.

Methods

The study was approved by the Ethics Committee of Mashhad University of Medical Sciences and the National Ethics Committee in Biomedical Research (IR.MUMS.REC.1399.142A). A descriptive cross-sectional, correlational study design was used. The sample consisted of 220 family caregivers of COVID-19 patients in Mashhad, Iran, in 2020. A pilot study was first conducted among 30 caregivers, and after calculating its correlation coefficient, the sample size was then estimated to be 220, using the following formula.

$$n=\frac{{\left(Z_{1-\frac{\alpha }{2}}+Z_{1-\beta }\right)}^2}{{\left(r\right)}^2}+3$$

Convenience sampling was used to select participants. Caregivers met the inclusion criteria if they were able to read and write, had provided care for only one COVID-19 patient, had a smartphone, were members in virtual social networks, were able to complete an electronic form, were willing to participate in the study, and had at least 1 week of experience caring for a COVID-19 patient. The objectives of the study were explained over the phone to the patient's caregiver and if they agreed to participate, the link for the questionnaire, which also included the informed consent form, was sent. After completing the electronic consent form, the caregiver was directed to the page containing the main questions of the questionnaire. Those who did not fill out the data collection tool completely were excluded.

Data Collection

Approval was obtained by the university ethics committee, and patients' telephone numbers were collected from their records, and phone calls were made. During the phone calls, the objectives of the study were explained and verbal consent to participate was obtained. It should be noted that most of the family caregivers shared a place of residence with the patients and used the same phone number provided to the treatment center to complete the form. A link related to the informed-consent form and the data collection tool was sent to those who met the inclusion criteria. The informed-consent form was embedded at the beginning of the tool, so the caregiver could be directed to the front page of the tool if they agreed to participate in the study. The link was sent to caregivers via common virtual social networks in Iran, such as Telegram, WhatsApp, Soroush, iGap, and Gap. The messenger was selected according to the caregivers' preferences.

Measurement

The data collection tool included three questionnaires: demographic characteristics, caregiver burden, and resilience. The demographic characteristics questionnaire included information about the caregiver (age, sex, level of education, occupation, marital status, family relationship with the patient, total duration of the caring process, the number of hours caring for the patient per day, etc.) and the COVID-19 patient (age, sex, level of education, duration of the acute stage of the disease, etc.). To assess caregiver burden, the 24-item Caregiver Burden Inventory developed by Novak and Guest (1989) was (Novak et al., 1989). It comprises five dimensions: time-dependence, developmental, physical, social, and emotional caregiver burden. Scores for each item are evaluated using a 5-point Likert scale ranging from 1 (not true at all) to 5 (true nearly all the time). The total score ranges between 24 and 120. A score of 24 to 47 indicates mild, a score of 48 to 71 indicates moderate, a score of 72 to 95 indicates severe, and a score of 96 to 120 indicates very severe caregiver burden (Haghgoo et al., 2017).

Abbasi et al. (2011) reported the Cronbach's coefficient alpha of the scale to be 90% and the subscales to be between 76% and 82%. Internal consistency was used to determine its reliability, and the Cronbach's coefficient alpha was calculated to be 0.89. To assess resilience, the 25-item Connor-Davidson Resilience Scale was used. Scores for each item are evaluated using a 5-point Likert scale ranging from 0 (not true at all) to 4 (true nearly all the time). The total score ranges between 0 and 100. In this scale, the cut-off point is 60, and a score of higher than 60 indicates higher resilience (Gerami Nejad et al., 2019). The reliability of the scale was confirmed in previous Iranian studies with the Cronbach's coefficient alpha of 0.84 (Momeni & Alikhani, 2013). In the current study, the reliability was examined, and the Cronbach's coefficient alpha was calculated to be 0.86.

Data Analysis

The data were then analyzed using SPSS v25. Frequency, percentage, mean, and standard deviation were used to describe the demographic characteristics. The Kolmogorov-Smirnov test was used to determine the distribution of the main quantitative data (total score of caregiving burden and resilience). The Spearman correlation test was used to determine the relationship between mean and standard deviation scores of resilience and caregiver burden. A p-value of less than 0.05 was considered statistically significant.

Results

In all, 220 caregivers of COVID-19 patients participated. Their mean age was 32.1±0.8 years, only slightly more (50.5%) were male and 32.3% were spouses. The mean total duration of the caring process was 24.5±9.21 days, and the number of hours caring for the patient per day was 7.6±0.6 hours. Most caregivers (50.9%) lived with the patient (Table 1). Patients' mean age was 50.17±18.28 years, and 50.5% were female. The mean duration of the acute stage of the disease was 21.6±9.5 days (as reported by the caregiver). Among those who were reinfected, 51.5% were reinfected one time, 21.2% were reinfected two times, and 27.3% were reinfected three times (Table 2).

Table 1. Caregivers' Demographic Characteristics.

Variable		Freq.	%
Sex	Female	109	49.5
	Male	111	50.5
Level of education	Illiterate	11	5
	Primary education	24	10.9
	Diploma	57	25.9
	University education	128	58.2
Occupation	Employed	125	56.8
	Unemployed	14	6.4
	Housewife	10	4.5
	Retired	47	21.4
	Others	24	10.9
Marital status	Single	85	38.6
	Married	130	59.1
	Widow	5	2.3
Relationship with patient	Spouse	71	32.3
	Child	43	19.5
	Father/mother	26	11.8
	Brother/sister	6	2.8
	Others	74	33.6
Economic status	Good	60	27.3
	Average	130	59.1
	Bad	30	13.6
Number of caregivers' family members	2 people	5	2.3
	3 people	30	13.6
	4 people	125	65.9
	More than 4 people	60	27.3
History of COVID-19	Yes	105	47.7
	No	115	52.3
Living with patient	Yes	112	50.9
	No	108	49.1

Table 2. Patients' Demographic Characteristics.

Variable		Freq.	%
Sex	Female	111	50.5
	Male	109	49.5
Education	Primary education	60	27.3
	Diploma	54	24.5
	University education	106	48.2
Occupation	Employed	52	23.6
	Unemployed	27	12.3
	Housewife	28	12.7
	Retired	25	56
	Others	75	25.9
Comorbidity	Diabetes	20	9.1
	High blood pressure	25	11.4
	Cardiovascular diseases	15	6.8
	Obesity	33	15
	Cancer	14	6.4
	Two or more than two underlying diseases	45	20.4
	Others	41	18.6
	None	27	12.3
Self-care ability	Yes	145	65.9
	No	75	34.1
Reinfection with COVID-19	Yes	66	30
	No	154	70
Insurance	Yes	149	67.7
	No	71	32.3

The mean score of resilience was 62.98±14.06 and based on the cut-off point, 90 caregivers (40.9%) reported lack of resilience and 130 caregivers (59.1%) reported resilience. The mean score of caregiver burden was 76.85±16.25. It was also observed that 10 caregivers (4.5%) experienced mild burden, 69 caregivers (31.4%) experienced moderate burden, 112 caregivers (50.9%) experienced severe caregiver burden, and 29 caregivers (13.2%) experienced very severe caregiver burden. The results showed there is a significant and inverse relationship between caregiver burden and resilience (p < 0.05; Table 3).

Table 3. Relationship between Caregiver Burden and Resilience.

	Resilience
	r	p
Total caregiver burden	-0.46	<0.001
Time-dependence caregiver burden	-0.20	0.002
Developmental caregiver burden	-0.44	<0.001
Physical caregiver burden	0.47	<0.001
Social caregiver burden	-0.27	<0.001
Emotional caregiver burden	-0.54	<0.001

Discussion

This study examined the relationship between resilience and caregiver burden among home caregivers of COVID-19 patients. The results showed that a significant percentage of caregivers experienced relatively high levels of caregiver burden, and caregiver burden is significantly lower among caregivers with higher levels of resilience. We found a relatively high level of caregiver burden among family caregivers of COVID-19 patients. This is consistent with previous research by Mirzaei et al. study (2020) who also reported that family caregivers of COVID-19 patients experienced higher levels of caregiver burden (Mirzaei et al., 2020).

COVID-19 patients usually have various and complicated needs. They need physical, psychological, and spiritual care, and may depend entirely on family caregivers to meet their needs during the disease. Meeting such needs can be one of the reasons for the high levels of caregiver burden among their caregivers (Bajwah et al., 2020). The results of previous studies found that home caregivers of COVID-19 patients are not well empowered and prepared to care for their patients with complicated needs (Parmar et al., 2021). Other issues such as financial and economic pressures as well as social constraints faced during the pandemic need to be addressed. Due to quarantines and lockdowns, most societies faced economic recession during this period. Social relations were also significantly affected due to the nature of the pandemic, which may have an impact on caregiver burden. Therefore, given the negative physical and psychological effects of high levels of caregiver burden on home caregivers, it is necessary that policy makers pay special attention to this group of people and consider the necessary plans to reduce and eliminate the burden (Ebrahimi et al., 2022).

The results of our study also showed that resilience can be effective in reducing caregiver burden of family caregivers. In Hassanzadeh and Hojjati (2016), the relationship between resilience and caregiver burden among parents of students with intellectual disability was evaluated, and similar results to the current study were found. In another study, the protective role of resilience in reducing caregiver burden and improving quality of life was emphasized (Luo et al., 2021). In this regard, it can be concluded that resilient individuals consider challenges as opportunities and prefer change to stability and consider the process of change in life as an opportunity to develop skills and self-awareness (Senturk et al., 2018). The caring process for COVID-19 patients can pose a heavy burden for their caregivers, can be perceived by many caregivers as a stressful, difficult, and annoying experience, and can lead to depression by creating negative emotions (Gallagher & Wetherell, 2020; Mirzaei et al., 2020). Therefore, resilience can play a major role in reducing caregiver burden among caregivers of COVID-19 patients who were affected by the psychological and physical complications of the caring process.

The findings are useful for home care clinicians. Results revealed that family caregivers of COVID-19 patients experienced relatively high levels of burden and home care nurses should take this into consideration. Home care nurses can use interventions that increase resiliency of family caregivers such as psycho-education, supportive interventions, and guided self-help (İnci & Temel, 2016; McCann et al., 2017; Seyedfatemi et al., 2019).

In this study, the mean score of caregiver burden was in the severe range, with 64% of caregivers reporting more than moderate level of burden. This finding is in line with the results of Mirzaei et al. study (2020), which was conducted among caregivers of COVID-19 patients in Khaf. However, caregiver burden was reported to be moderate in other studies conducted among caregivers of patients with diabetes (Bamari et al., 2016) and cancer (Miguel et al., 2017). This difference can be related to the nature of the disease and the groups of patients being cared for. Caregivers of COVID-19 patients themselves are at risk for COVID-19, and this in turn has a negative impact on them.

In this study, the mean score of resilience indicated that caregivers are resilient when caring for COVID-19 patients; however, this score was in the borderline range. On the other hand, almost 40% of them reported low levels of resilience. Fajardo Ramos et al. (2020) examined resilience among home caregivers of older adults during the COVID-19 pandemic and found approximately 22% of caregivers had low levels of resilience (Fajardo Ramos et al., 2020). In a study by Karimirad et al. (2018), results also showed that approximately 85% of caregivers had above-moderate levels of resilience. The differences regarding the results of the studies can be related to the differences in data collection tools and their cut-off points. It is also worth mentioning that the groups of patients being cared for can be a factor in caregivers' levels of resilience, as the difficulties of caring for each group are different. Resilience is a dynamic process over time and results from the combination and interaction between internal and external factors, such as family, and social and cultural environments, which facilitate overcoming risk and adversity constructively. Therefore, it can be concluded that in the current situation, resilience of caregivers of COVID-19 patients was affected by new conditions and comparing it with other conditions may not seem logical.

Limitations

One of the limitations of our study is the electronic sampling. However, we tried to provide participants with a variety of communication channels for any possible questions. This likely caused some caregivers who do not have a suitable electronic device (computer or smart phone) to be excluded from the study. The other limitation is the use of self-report because culture, interests, and beliefs may influence their answers. It should also be noted that the current study was conducted in only one center and limited the generalizability of the data.

Conclusions

In our study, caregivers reported relatively high levels of caregiver burden. As resilience is a promising factor for caregivers and prepares them to provide appropriate care, promoting resilience is needed during the pandemic. This can be done by providing social and formal support to caregivers, developing effective coping skills, and reinforcing their strengths through education. This issue should be considered in healthcare planning. Due to limited studies, more studies are recommended to be conducted in this regard.