Burden of care among primary caregivers’ of spinal cord injury patients attending a tertiary care center in Eastern Nepal

Nepal is a resource-constrained country where primary caregivers of spinal cord injury (SCI) patients face increasing physical, social, emotional, and economic burdens. This study aimed to assess the level of primary caregiver burden and the association between caregiver burden and sociodemographic factors of SCI patients and their caregivers. The burden of caregivers was evaluated in 71 primary caregivers through face-to-face interviews using the Zarit Burden Interview Scale (ZBI-22). Based on the total ZBI-22 score, caregiver burden was classified as little or no, mild to moderate, moderate to severe, and severe. The mean caregiver burden score was 46.28 ± 12.05. Moderate to severe burden was more common (63.4%), followed by severe (18.3%), mild to moderate (11.3%), and little or no burden (7.0%). Caregivers were more worried about “what the future holds for patients (3.07 ± 1.22) and what should do more for patients (3.04 ± 1.01)”. Several sociodemographic factors, such as marital status (P = 0.009), activities of daily living (P = 0.038), monthly family income (P = 0.023), and time spent caring for patients (P = 0.028), were statistically significantly associated with the burden on primary caregivers. Our results showed that primary caregivers experienced a high burden of care, primarily related to fear and uncertainty about the patient’s future, patient’s dependency, caregiver exhaustion and finances. Several sociodemographic factors of patients and their caregivers were associated with the burden of the primary caregivers.


Ethical consideration
The Institutional Review Committee (IRC1295/018) of the BP Koirala Institute for Health Science, Dharan, Nepal, ethically approved this study. The purpose and objective of this study were initially explained to all participants and allowed them to participate voluntarily. Before conducting interviews and data collection procedures, each participant signed a written informed consent form. The procedures carried out in this study adhered to the ethical standards of the institutional and national research committees.

Sampling and sample size determination
We used the mean and standard deviation (38.9 ± 15.2) of the Khazaeipour et al. study to determine the sample size [7]. This study used the Zarit Caregiver Burden Interview (ZBI), a 22-item burden scale, to measure the burden of primary caregivers of SCI patients. After using the following formula: n = (Z α/2 ) 2 X SD 2 /e 2 , where n = sample size, Z = 1.96 at 95% confidence interval, SD = standard deviation = 15.2, and e = allowable error, which was 10% of the mean burden value of the Khazaeipour et al. study (e = 3.89) [7]. The value e = 3.89 indicates that we allowed an error of 3.89 units in our study. Then, our sample size was 58.65. The final sample size was 71 after adding 20% of the calculated sample size to the nonresponse rate. The sample was selected using a purposive sampling technique.

Study instruments i. The Zarit Burden Interview Scale of 22 Items (ZBI-22)
A ZBI-22 scale is a well-validated tool to measure subjective stress and perceived social, physical, financial and emotional burdens [7,12]. Responses were scored on a 5-point Likert scale: 0 = Never, 1 = Rare, 2 = Sometimes, 3 = Frequently, and 4 = Nearly always. The total burden score ranged from zero to 88. An increase in the total ZBI score indicated a corresponding increase in the burden on the caregivers. Based on total ZBI scores, caregiver burden levels were classified as (a) little or no burden (total score = 0-20), (b) mild to moderate burden (total score = 21-40), (c) moderate to severe burden (total score = 41-60), and (d) severe burden (total score = 61-88) [7,12]. ii.

Activities of Daily Living (ADL) of patients
To assess the patient's ADL, we asked whether patients needed help with grooming, bathing, dressing, feeding, toileting, and transport (6 items) [13,14]. The score for each item was No = 0; Yes = 1. The total score was 0-6. A higher score indicated that the patients needed more physical assistance. We classified patients according to their ADL scores as (a) independent patients (total score = 0, no need for assistance regardless of the aid used), (b) patients with minimal need for assistance (total score ≤ 25%), (c) patients with moderate need for assistance (total score between 26% and 50%), (d) patients with maximum need for assistance (total score between 51% and 75%) and (e) patients with total need for assistance (total score > 75%) [13,14].

Study procedure
All researchers worked together to prepare a questionnaire that contained questions about the sociodemographic characteristics of patients with SCI and their caregivers, the patient's ADL, and the Zarit Burden Interview Scale of 22 items (ZBI-22). The ZBI-22 scale questions were not available in Nepali. Therefore, we initially translated the English ZBI-22 questionnaire into Nepali and then retranslated it into English to check whether the meaning was the same. The opinions were obtained from the English-Nepali translator and then pretested with ten caregivers to improve the presentations, clarity and other ambiguities before initiation of data collection. The principal investigator conducted faceto-face interviews with 71 primary caregivers in a separate room to collect data. We also inquired about social support, including questions about employment opportunities or financial aid from agencies other than the Nepal government; emotional support from family, friends and others; educational information, advice, guidance or suggestions related to patient care; and instrumental support, including wheelchairs or others [7,8].

Statistical analysis
After using the Statistical Package for Social Sciences (SPSS, Chicago, IL, USA) version 11.5, we expressed continuous variables as the mean and standard deviation and categorical variables as the frequency and percentage. To determine the association of sociodemographic variables with burden scores, we used an independent sample t test and one-way analysis of variance (ANOVA) with post hoc analysis. We used the t test to compare the mean between two categorical variables and one-way analysis of variance (ANOVA) for the means of more than two categorical variables. Variables with a P value less than 0.05 were statistically significantly associated with the burden of primary caregivers.

The mean score for individual items of the ZBI-22 scale
The total mean burden score for 71 primary caregivers was 46.28 ± 12.05. Individual mean values of the ZBI items ranged from 1.10 to 3.07. After analyzing each item of the scale, the mean burden scores for questions related to self-criticism, fear, and uncertainty were high.

Sexwise distribution of burden levels among primary caregivers
As shown in Fig. 1, 66.7% of women and 56.5% of men experienced a moderate to severe burden level, which was more common (63.4%) among primary caregivers of SCI patients. However, the proportions of caregivers with little or no burden, mild to moderate burden and severe burden were 7.0%, 18.3% and 11.3%, respectively.

Caregiving task and burden on primary caregivers
Most primary caregivers assisted patients with transfer (60.6%), bathing (62.0%) and bowel and bladder care (59.2%), while carrying out these activities put a heavy burden on primary caregivers, as shown in Table 2.

Characteristics of SCI patients and their relationship to caregiver burden scores
Of 71 patients with SCI, the majority were under 40 years of age (53.5%), were married (73.2%), were male (77.5%) and belonged to the Janjati and Dalit ethnic groups (56.3%). More than half (69.0%) of the patients were literate. The mean duration of the injury was 6.20 ± 04.62 months, with 60.6% having spinal cord injuries within 6 months. The patients' ADL scores showed that the total, maximum, moderate, and minimal assistance needed was 31.0%, 12.7%, 29.6% and 26.8%, respectively. The association between patient characteristics and caregiver burden scores showed that marital status (P = 0.009) and patient ADL (P = 0.038) were statistically significantly associated with primary caregiver burden scores. Caregivers of married patients and patients who needed maximum and total assistance to perform their ADL had high mean burden scores (Table 3).

Characteristics of caregivers and their relationship to caregiver burden scores
Most of the primary caregivers were women (67.6%), spouses (60.6%) and literate (64.8%). More than half of the caregivers (59.2%) had monthly household incomes below 20,000 rupees, and 62.0% received partial financial support from the Nepal Government. The mean duration of patient care was 5.23 ± 4.03 months. More than two-thirds of caregivers 1 3 (66.2%) had cared for patients in the past 6 months, and one-third (39.4%) had spent more than 12 h per day in the care process. However, 69.0% of the primary caregivers received physical support from their family members. The monthly family income of primary caregivers (P = 0.023) and the time spent caring for patients per day (P = 0.028) were statistically significantly associated with the burden of primary caregivers. The caregivers who had a monthly family income of more than 20,000 rupees and those who spent more than 12 h a day in the care process had high mean burden scores (Table 4).

Discussion
In our study, a large proportion of primary caregivers perceived moderate to severe burden (63.4%) with a mean burden score of 46.28 ± 12.05, although the mean duration of care was just five months. The main aspects of this burden were fears and uncertainty about the future of patients, patient's dependence on caregivers, caregiver exhaustion, and finances. A study from China reported that a very high percentage (88.0%) of primary caregivers of patients with SCI experienced a moderate to severe burden on the ZBI-22 scale [9]. This study also reported that caregiver burden was due to patient dependence, impairment in caregiver work or job, inability to manage time for their lives and social activities, and finances; however, most caregivers in this study were men. A previous study in Nepal found that 75.0% of primary caregivers had a severe burden on the ZBI-12 scale, and this burden was due to caregiver's responsibility and finances [5]. However, other factors, such as age [7,[15][16][17], sex [9,10,18], education levels [5,7,17,19,20], occupation [5, 10, 12,  [14,21], economy [8,9], and social support [8], also have a significant influence on the burden on primary caregivers. Therefore, the use of various tools to measure the burden of primary caregivers, patient dependency on caregivers, caregiver responsibilities, and personal, social, financial and sociodemographic factors could largely influence the severity of the caregiver burden.
Most of the patients with SCI in our study were men (77.5%) and belonged to a low caste Janjati or Dalit group (56.3%). However, most of their primary caregivers were women (67.6%) and spouses (60.6%). Numerous other studies have shown similar results and highlighted the prevalence of women as primary caregivers [5,7,8,11,18]. Our society still assigns women a caring role to care for disabled or sick persons, children, and older family members in addition to household activities. Male members perform risky outdoor work and are not directly involved in patient care; however, their female members generally involved in patient care.
Research has shown that age and educational level significantly affect the burden on primary caregivers [5, 7, 15-17, 19, 20]. However, our research showed that caregiver burdens were not influenced by age or educational level because most of our caregivers were under 40 years of age (66.2%) and literate (64.8%). Young and educated caregivers experienced little burden because they more easily understood patient needs and problems. They can successfully handle stressful situations and adapt to this new role by developing coping methods.
As expected, spouse caregivers have more burden than unmarried or single caregivers because they have to handle a wide variety of responsibilities, including household chores, work, children, relatives, and finances. In our study, the mean score for item 3 of the ZBI-22 scale (caregivers feel stressed between patient care and trying to fulfil other responsibilities) was high (2.31 ± 1.30), and the patient's marital status was significantly associated (P = 0.009) with the burden of primary caregivers. These results indicate that caregivers have overloaded or stressful roles. A survey by Vagharseyyedin et al.  also reported that spouse caregivers or those with five or more children in their families experienced a high burden [17]. However, our results showed that the number of children or family members was not statistically significantly associated with the caregiver burden.
Other studies have reported that caregiver occupational status and monthly family income significantly influence the burden of the primary caregiver [5, 8-10, 12, 14, 19]. A previous study in Nepal showed that unemployed or financially unsupported caregivers faced a high burden of care [5]. Contrary to these findings, our study showed that the relationship between occupational status and caregiver burden score was not statistically significant, even though employed  or self-employed caregivers had a higher burden score than farmers or homemakers. However, the association between caregiver monthly family income and mean burden scores was statistically significant (P = 0.023). Caregivers with a monthly family income of more than 20,000 rupees had high mean burden scores. These results suggest that employees or self-employed caregivers may be more concerned about losing their existing paid jobs or services or closing their businesses. These caregivers may not want to quit their job or self-employment, although they have two full-time duties to fulfil their job or self-employment and care for patients. Furthermore, male caregivers tend to be older and earn more money than female caregivers. Therefore, these high-paid, old-age men or employed or self-employed caregivers could experience more burden for care in our study. Similar to other studies [14,21], our study showed a statistically significant association between patient ADL scores and caregiver burden scores (P = 0.038). In our results, 43.7% of patients required maximum assistance to total assistance to perform their ADL, and their caregivers experienced high burdens. Patients with high ADL scores were more dependent on their caregivers and expected more help; however, this process is a demanding and time-consuming task for caregivers. Caregivers also perceived that they did not have enough time to themselves and did not care for the patient much longer. These increased negative caregiver perceptions may have increased caregiver burden feelings.
The literature has shown that the duration of patient injury [7] and the duration of patient care [5,19] have a significant relationship with the burden on primary caregivers. In contrast, our results reported that caregiver burden was not significantly associated with the duration of patient injury or the length of patient care. Our caregivers may adapt to new roles, responsibilities, and situations as they provide care over long periods. Furthermore, more than two-thirds of our caregivers (69.0%) received physical support from their family members and reported less burden. This finding highlights the importance of long-term family support in patient care. However, in our results, the time spent caring for patients per day was statistically significantly associated with the burden of primary caregivers (p = 0.028). Caregivers who cared for patients daily for more than 12 h had a high caregiving burden. Another study conducted in Fiji also reported similar results [16]. Spending more time with patients causes caregivers to be physically and mentally frustrated and loses their flexibility in caring for patients. Our caregivers also felt stressed about managing time for work and family; therefore, they might feel a high burden.
The limitations of our study were that we did not consider coping strategies or other factors that influence the burden on caregivers, such as the type, extent, or severity of the patient's injury and housekeeping or work-related or other caregiver activities. The caregiver burden may be underestimated or overestimated, as caregivers may not remember past events. The opinion of some primary caregivers may also be influenced by the expectation of financial support from researchers. Furthermore, longitudinal studies are recommended using larger samples from various communities in Nepal to identify the severity and factors associated with the burden on primary caregivers.

Conclusion
The results of our study revealed that moderate to severe burden was more common. Fear and uncertainty about the patient's future, patient dependability, caregiver exhaustion, and finances were the main aspects of this burden. Several sociodemographic factors, such as time spent caring for patients, monthly family income, and patient's ADLs, significantly affected the caregiver burden. Modifying the time spent caring for patients and addressing the needs for counseling, training, respite care, and education may reduce the burden on caregivers.

Declarations
Ethics approval and consent to participate All procedures performed in this study complied with the ethical standards of the institutional and national research committee. The study was approved by the Institutional Review Committee (IRC1295/018; dated November 29, 2018).

Consent for publication All authors have consented to publication.
Competing interests All authors declare that they have no competing interests or other interests in regard to the publication of this manuscript.
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