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Burden and coping strategies among Jordanian caregivers of patients undergoing hemodialysis Eman Khamis ALNAZLY Department of Nursing, Al-Ahliyya Amman University, Amman, Jordan
Abstract Recent studies reported hemodialysis patients’ sufferings from physical and psychosocial issues, but few studies reported family–caregiver burdens. This study aims to explore the burdens and coping strategies of caregivers of patients receiving hemodialysis. Caregivers of patients undergoing hemodialysis (n = 139) at 3 dialysis units were given 3 forms: Caregiver and Patient Characteristics, Oberst Caregiving Burden Scale Difficulty Subscale, and Ways of Coping Questionnaire. Descriptive statistics, correlational analysis, and multiple regression analysis were performed. The Oberst Caregiving Burden Scale was significantly related to self-controlling (r = 0.20) and seeking social support (r = 0.17). Caregiver burden was positively and significantly correlated with selfcontrolling coping subscale, with t = 1.10, P = 0.05, and β = 0.25. Living with the patient was the only variable that was a significant predictor of burden, with t = 2.96, P = 0.00, and β = 0.331. Living with patients predicted caregiver burden, and the burden scale correlated with selfcontrolling. The findings contribute to the evidence on the adverse health effects of caregivers of patients receiving hemodialysis. This study suggests that nursing interventions should target caregiver knowledge for better coping. Key words: Burden, caregiver, coping, end-stage renal disease, hemodialysis, stress
INTRODUCTION End-stage renal disease is a medical condition that requires lifelong dialysis,1 which is associated with physical and psychosocial challenges that affect the patients and their family caregivers.2 Caregivers help patients at home with many daily activities, including transportation to the dialysis units, symptom management, mobility, dressing, and preparing an appropriate renal diet.3 Studies have found that caregiving has both positive and negative consequences for caregivers.4 Commonly reported positive consequences include intrinsic gratification, or rewards, that come from caring, performing Correspondence to: E. K. Alnazly, RN, PhD, Department of Nursing, Al-Ahliyya Amman University, Amman 19328, Jordan. E-mail: [email protected]
© 2015 International Society for Hemodialysis DOI:10.1111/hdi.12318
the role of an accomplished partner, good relationships, and learning new skills.5 Commonly reported negative consequences for caregivers include decreased psychological well-being, reduced physical health, and diminished social relationships.5–7 As a result of these challenges and role changes that caregivers face, they are often fearful, tired, vulnerable, isolated, restricted from pursing their own activities, and overwhelmed by responsibility.6,7 In addition, they often report work-related difficulties such as decreasing work hours, rearranging work hours, taking days off without pay, and even quitting their jobs or retiring early in order to provide care.8 Caring for chronically ill patients usually falls on family members who are quite often spouses, parents, and siblings. In Muslim communities, the religious teaching drives families to be actively involved in the long-term C 2015 International Society for Hemodialysis V
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care of chronically ill patients who often reside in the same home. Families are thus unlikely to seek out nursing homes and instead take on the responsibility of providing direct caregiving.9 Long-term caregiving is often a stressful process for caregivers, and so it is important to understand how they cope with caregiving-related stressors. According to Lazarus and Folkman,10 coping involves “constantly changing cognitive and behavioural efforts to manage specific external and/or internal demands that are appraised as taxing or exceeding the resources of the person” (p. 141). Studies have often focused on burdens among caregivers of patients with dementia,11 congestive heart failure,12 and stroke,13 but few studies have focused on burdens of caregivers for patients undergoing hemodialysis14; this is especially so for studies that relate their personal characteristics to their caregiving burden or how they cope with stressors related to caregiving. Often, caregiving responsibilities continuously increase and become very stressful. In some cases they can consume the entire relationship. Al-Jauissy15 studied the unmet needs of Jordanian cancer caregivers, and pointed out that the cultural issues of Jordanians and Arabs may explain the unmet needs that subsequently increase their sense of burden. The Jordanian and Arabic cultures generally prescribe a high sense of obligation and commitment to the sick, which is revealed at 3 levels: intentions, verbal expressions, and actions. Consequently, they attempt to meet the obligation and commitments perfectly, which intensifies the 3 levels of burden.
Hemodialysis in Jordan End-stage renal disease patients have been treated mainly with hemodialysis in Jordan. Peritoneal dialysis has not been established as an alternative and has not gained popularity. In Jordan, there are 72 dialysis units distributed all over the country and administered by the Ministry of Health, Royal Medical Services, university hospitals, and private sector. Patients are seen by treating nephrologists during each dialysis session. The cost of treatment is typically covered as follows: patients pay between zero and 25% of the total cost of dialysis treatment in proportion to their financial status and their type of health insurance. The rest is paid by the Ministry of Health, Ministry of Defense, or private insurance companies. Patients are usually prescribed a standard dose of dialysis which is 4 hours long 3 times a week. However, some patients refuse the standard dose and prefer 4 hours of dialysis twice a week. Patients travel on average approximately 10 km, and patients and caregivers pay the transportation fees.16 Hemodialysis International 2016; 20:84–93 2
Jordan is a developing country with a lower middleincome and with a per capita gross national income of about $4950 for 2013.17 Al-Shdaifat and Manaf18 reported that the direct nonmedical costs per patient (transportation costs, transportation time, dialysis time, over-thecounter medications, traditional medicine, and other personal equipment) was $2160 per year, and the direct nonmedical cost per caregiver was $1799 per year. The productive loss for a caregiver was $4341 per year. This figure includes the loss of a caregiver’s total income because of quitting their jobs, reducing or missing work hours, and taking personal days off. For the same component, the productivity loss for a patient was $9000 per year.18 Alnazly and Samara19 conducted a qualitative study aimed at exploring the experiences of family caregivers who were caring for patients receiving hemodialysis. Alnazly reported that the caregivers’ burden was high due to the household’s low income and the new overwhelming responsibility. However, some caregivers did receive some financial compensation from other family members to cover patients’ expenses such as transportation, co-payments, and medical supplies. Caregivers of patients receiving hemodialysis in Jordan have not received as much research attention as caregivers of stroke and cancer patients. Hemodialysis nurses should be concerned about patients receiving hemodialysis and their caregivers’ well-being, because families need guidance on how to protect family caregivers from distress, as well as about how to protect the patients from harm. Thus, the purpose of this study is to define, for caregivers of patients undergoing hemodialysis, the nature of the relationships that exist between their personal characteristics, the stressors they experience, and the coping strategies they utilize to cope with stressorrelated symptoms.
METHODS Instrument Caregiver and patient characteristics The researcher created a questionnaire to collect specific information about the characteristics of caregiver and patients (see Table 1). Oberst Caregiving Burden Scale (OCBS) difficulty subscale This scale was developed to measure caregivers’ perceptions of burden associated with the physical and emotional task of caregiving. The scale consists of 15 separate 85 Hemodialysis International 2015; ••:••–••
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Table 1 Distribution of sociodemographic data of caregivers and patients undergoing hemodialysis (N = 139) Characteristics Caregiver age, year Mean (SD) Range Patients’ age, year Mean (SD) Range Caregiver gender (%) Males Females Patients’ gender (%) Males Females Caregivers, years of education Mean (SD) Range Patients’ years of education Mean (SD) Range Duration of caregiving (years) Mean (SD) Range Duration of caregiving (h/week) Mean (SD) Range Caregivers’ relationship to patients (%) Spouse Son/daughter Son/daughter-in-law Other relatives Employment status (%) Employed Not employed Living arrangement (%) With patients Live nearby the patents
Values 32.23 (11.78) 21.0–65.0 54.87 (14.01) 18.0–80.0 65 (47) 74 (53) 70 (50) 69 (50) 12.74 (3.98) 10.0–18.0 10.63 (4.60) 8.0–18.0 4.93 (4.47) 1.0–28.0 49.84 (32.76) 8.0–126.0 36 (26) 61 (41) 8 (5.8) 34 (25) 87 (63) 52 (37) 75 (54) 64 (46)
SD = standard deviation.
items used to measure the difficulty of caregiving tasks on a 5-point Likert-type scale ranging from 1 (not difficult) to 5 (extremely difficult).20 The scale had an internal consistency reliability of α = 0.92 in a sample of 21 caregivers of patients with heart failure. Gonzalez and Bakas21 reported that the task difficulty subscale internal consistency reliability in stroke caregivers had been acceptable with alphas ranging from 0.84 to 0.94. The OCBS was translated to Arabic in accordance with Brilin’s back translation model.22 A validation of 15 items was sought from 4 of the nursing staff employed at 2 dialysis units and 2 caregivers 86 Hemodialysis International 2015; ••:••–••
of hemodialysis. The researcher added examples, designated as Items 1, 3, 9, and 13. A pilot study was conducted on 10 participants, and all of them indicated the items were all clear and easy to understand. Ways of Coping Questionnaire-Revised (WOCS-R) The WOCS-R was used to measure strategies for coping with stressful situations. The reliability of the subscale ranged from 0.60 to 0.75.23 The Cronbach’s alpha for the coping subscale in this study was 0.68–0.78. The WOCS-R consists of 66 statements measured on a 4-point Likert-type scale, as follows (0 = does not apply or not used, 1 = used somewhat, 2 = used quite a bit, 3 = used a great deal).24
Sample size and setting A convenience sample of Jordanian research participants was recruited from 3 dialysis units in cities of Amman and Irbid. The sample was composed of 139 caregivers who volunteered to participate in the study; they were recruited through local dialysis facilities in Amman and Irbid. After the research proposal had been subjected to the approval of the Research Ethics Boards of 3 hospitals affiliated with dialysis units, a contact person in each facility was appointed to recruit adult patients who had family caregivers and met the following research study inclusion criteria: the caregiver was a family member of the patient, identified by the patient undergoing hemodialysis as the person who cares for him or her most at home, at least 21 years old, able to read and write in Arabic, currently caring for the patient undergoing hemodialysis and had been caring for the patient for at least 6 months, and voluntarily willing to participate in the study. The patients were informed of the study, and once they agreed to have their caregiver participate, the caregivers were contacted by phone to confirm their consent to participate and to schedule the interview. Participants were informed that they could withdraw from the study at any time for any reason.
Data collection Participants were provided with booklets, which included the study questionnaires. Participant filled out the questionnaires in a private room at the dialysis unit or at home. After the caregivers completed the questionnaires, they were returned to the contact person at dialysis unit. Participants’ names were coded as numbers on all questionnaires to ensure their confidentiality. Hemodialysis International 2016; 20:84–93 3
Data management Data collected were entered into SPSS version 22.0 (IBM Corp., Armonk, NY, USA) and then printed out and double checked. Data were examined using descriptive statistics to identify any outliers in the distributions.
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was 4.9 (SD = 4.5), and 64% of the caregivers lived with the patients. The patients’ mean age was 54.87 years (SD = 14.01) and ranged from 8 to 80 years; of them, 50% were males and 50% were females. More than half of them (54%) lived in the same house with a caregiver.
Analysis of data
Describing caregiver burden
The data analysis included both descriptive and inferential statistics. The descriptive statistics included frequencies, percentages, means, standard deviations (SDs), and minimum and maximum values for variables analyzed (including the demographic/clinical and the items on both the OCBS difficulty subscale and the WOCS-R). The following inferential statistics were used with results considered significant at P ≤ 0.5.
Table 2 presents the caregivers’ mean and SD ratings, in descending order, for each task on OCBS difficulty subscale, and the percentage of caregivers who rated each item as at least moderately difficult (i.e., moderately, very, or extremely difficult, with a score of 3 or higher on the 5-point scale). In general, the findings showed that caregivers perceived the tasks as only somewhat difficult, with an overall average OCBS mean score of 2.79. Although this score indicated a slightly less than moderate degree of difficulty, a considerable group of caregivers rated 6 of the 15 tasks as above average in difficulty. More three-quarters (76%) of the caregivers, for example, rated Item 12 (“Findings and arranging someone to care for the patient while you are away”) more than moderately difficult, with a mean of 3.25 (SD = 1.19). Approximately 71% of caregivers rated Item 8 (ranked second highest), regarding additional household tasks, as being moderately difficult, with a mean of 3.06 (SD = 1.11). Other items with a higher than average overall difficulty score, as shown in Table 2, were Item 9 (M = 3.05, SD = 1.09), regarding additional tasks outside the home; Item 11 (M = 3.05, SD = 1.08), regarding managing behavior problems; Item 7 (M = 2.94, SD = 0.10), regarding managing finances; and Item 10 (M = 2.84, SD = 1.10), regarding coordinating, arranging, and managing patient services and resources. It is interesting to note the 3 items the caregivers rated least difficult involved medical or nursing treatment (Item 1), personal patient care (Item 2), and emotional support (Item 4). This finding suggests that caregivers consider personal aspects of care either more than to their liking or better suited to their training than tasks involving management and routine activities, such as shopping, cooking, and cleaning and be a suitable topic for further research.
1. The Pearson product moment correlation coefficient was used to assess the relationship between the items on the OCBS difficulty subscale and the WOCS-R, respectively, and demographic questionnaire data for caregivers. 2. The t-test for the difference between means was used to assess the relationships between the items on OCBS difficulty subscale and the WOCS-R, and the dichotomous nominal scale characteristics of caregivers, including their age, gender, education, and their residential status relative to the patient. 3. Analysis of variance was used to assess the relationship between the items on the OCBS difficulty subscale and the WOCS-R, respectively, and the nominal scale characteristics of caregivers with more than 3 categories, including their (a) relationship to the patient; (b) residential status relative to the patient; and (c) education. In this study, the OCBS difficulty subscale had internal consistency reliability alpha = 0.9 and the WOCS-R ranged from 0.68 to 0.78 on a sample of 139 of caregivers for hemodialysis patients.
RESULTS Participants Table 1 presents the sociodemographic characteristics of the participants. As can be seen, a total of 139 caregivers participated in the study. Their mean age was 32.24 years (SD = 11.78) and ranged from 18 to 65 years; of them, 47% were males and 53% were females. In regard to providing full-time caregiving, 63% were employed and 37% were unemployed. The mean number of years of caregiving Hemodialysis International 2016; 20:84–93 4
Describing caregiver coping Table 3 shows the minimum, maximum, total mean scores, and SDs of each coping strategy subscale for the caregivers, on a scale of 1–3. The research participants used both problem-focused and emotion-focused coping, which were dispersed among the total number of categories rather being concentrated at one end or the other 87 Hemodialysis International 2015; ••:••–••
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Table 2 Task item means in descending order and standard deviations for caregivers on the OCBS difficulty subscale, and percentage who rated tasks at least moderately difficult (N = 139) Item no. 12 8 9 11 7 10 14 6 13 15 3 5 4 2 1
Finding and arranging someone to care for the patient while you are a way Additional household tasks for the patient (laundry, cooking, cleaning, yard work, home repairs, etc.) Additional tasks outside the home for the patient (shopping for food and clothes, going to the bank, pick up medication from pharmacy, etc.) Managing behavior problems (moodiness, irritability, confusion, etc.) Managing finances, bills, and forms related to patient’s illness Structuring/planning activities for the patient (recreation, rest, meals, things for the patients to do, etc.) Coordinating, arranging, and managing services and resources for the patient (scheduling appointments, arranging transportation, locating equipment and services, and finding outside help) Providing transportation or “company” (driving, riding along with patient, going to appointments, driving patient around for errands, etc.) Communication (helping the patient with phone calls, writing, or reading, take and receive messages, etc.) Seeking information and talking with doctors, nursing, and other professional health-care worker about the patient’s conditions and treatment plan Assistance with physical activities (walking, getting in and out of the car, taking stairs up and down, push the patient in a wheelchair, etc.) Watching for and reporting the patient’s symptoms, watching how the patient is doing, monitoring the patient’s progress Emotional support, “being there” for the patient Personal care (bathing, getting dressed, cooking, etc.) Medical or nursing treatments (giving medications, skin care, dressings, follow therapeutic medical regimen etc.)
3.25 1.19 76 3.06 1.11 71 3.05 1.09 69 3.05 1.08 68 2.94 0.10 69 2.84 1.10 61 2.80 1.10 63 2.76 1.09 58 2.70 1.13 63 2.68 1.04 62 2.65 1.09 56 2.63 1.04 55 2.53 1.19 49 2.47 0.10 49 2.42 1.03 48
OCBS = Oberst Caregiving Burden Scale; SD = standard deviation.
of the continuum. Interestingly, positive reappraisal, a problem-focused form of coping, was the most preferred (see Table 4 for specific items in this category). The findings elicited by the positive reappraisal subscale suggest a Table 3 Minimum and maximum scores, total mean scores in descending order, and standard deviations of each subscale of the WOCS-R among caregivers (N = 139) WOCS-R subscale
Positive reappraisal (P) 0.71 3.00 1.85 Planful problem solving (P) 0.83 2.83 1.77 Self-controlling (E) 0.71 2.86 1.74 Distancing (E) 0.33 3.00 1.71 Seeking social support (P and E) 0.17 3.00 1.56 Accepting responsibility (E) 0.00 3.00 1.55 Confrontive coping (P) 0.33 2.67 1.52 Escape–avoidance (E) 0.38 2.88 1.51
SD 0.48 0.49 0.45 0.51 0.53 0.59 0.46 0.51
E = emotion-focused coping; P = problem-focused coping; SD = standard deviation; WOCS-R = Ways of Coping QuestionnaireRevised.
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preference for faith, indicated by high mean scores for “My faith in God became stronger” (Item 36) followed by “I prayed” (Item 60). It was found that the mean score of positive reappraisal as a coping strategy was 1.85 (SD = 0.48) followed by planful problem solving, with a mean of 1.77 (SD = 0.49), and self-controlling, with a mean of 1.74 (SD = 0.45). All caregivers, however, used the 8 coping strategies, with a mean range of 1.85 (SD = 0.48) to 1.51 (SD = 0.51).
Table 4 Means and standard deviations for positive reappraisal items on the coping subscale (N = 139) No.
Found new faith (my faith in God became stronger) I prayed Rediscovered what is important in life I changed something about my self
1.96 1.94 1.68
1.08 1.01 0.99
60 38 56
SD = standard deviation.
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Table 5 Pearson correlation between WOCS-R and OCBS difficulty subscale among caregivers of patients undergoing hemodialysis (N = 139) WOCS-R subscale
Confrontive coping Distancing Self-controlling Seeking social support Accepting responsibility Escape avoidance Planful problem solving Positive reappraisal
0.11 0.03 0.20* 0.17* 0.14 0.10 −0.07 −0.04
OCBS = Oberst Caregiving Burden Scale; WOCS-R = Ways of Coping Questionnaire-Revised. *P ≤ 0.05, two tailed.
Relationships with burden and coping strategies Table 5 shows the Pearson correlation coefficient between the overall OCBS and each of the respective coping strategies for the research participants. As can be seen, OCBS was significantly related to 2 of the subscales: self-controlling (r = 0.20) and seeking social support (r = 0.17). The positive r values designate direct relationships, but the r2 values for these respective finding, of 0.04 and 0.03, indicate weak relationships. Among the nonsignificant results, it was found that burden was negatively correlated with the coping strategies planful problem solving (r = −0.07) and positive reappraisal (r = −0.04), and positively correlated with the coping strategies confrontive coping (r = 0.11), distancing (r = 0.03), and accepting responsibility (r = 0.14). In summary, the findings show that burden was correlated significantly with 2 (25%) of the WOCS-R subscales, albeit weakly, and not significantly correlated with 6 (75%) of the subscale.
Prediction of burden by caregiver sociodemographic and coping The analyses indicate that ways of coping can predict a small percentage of the variance in the burden level,
nearly 8.7%, while 91.3% of the overall variance in the burden level apparently is attributable to factors other than ways of coping (see Table 6). As Table 7 shows, the variable “currently live in the same home as the patients” was the only significant predictor of caregiver burden, t = 2.96, P < 0.01, β = 0.331. In addition, it is clear from this analysis that caregiver burden was positively and significantly correlated with the self-controlling subscale, with t = 1.10, P = 0.05, and β = 0.25. This subscale was the only one that had predictive ability (out of the 8) WOCS-R subscales analyzed. In addition, as Table 8 shows, sociodemographic variables explain a small percentage of the variance in the burden level, nearly 11.4%, while 88.6% of the overall variance in the burden level is apparently attributable to factors other than demographic and personal variables.
DISCUSSION Previous studies have shown that caregivers of patients undergoing hemodialysis experience burden.6,7 Participants’ burden levels in the present study were moderate, with a range of 2.42–3.25, indicating that some caregivers were stressed by their caregiving tasks. The current study reported that the caregivers’ perceived burden is associated with both physical and emotional tasks. The burden level was at a slightly less than moderate degree of difficulty and the highest scores of burden were related to “Finding caregiver to help while away,” “Managing household tasks outside of the home for the patients,” and “Managing behavioural problems” were also dominant contributors to the level of burden caregivers’ perceived. The items “Finding caregiver to help while away” and “Managing household tasks outside of the home for the patients” were unexpected findings; knowing the Jordanian family system is an extended family system where immediate family members live close to grandparents, aunts, uncles, and cousins. The relationships between relatives are usually very close and family members work together to help each other in times of need.25,26 Based on these findings, it is recommended that policy makers keep the patient’s family in mind when
Table 6 Multiple regression analysis: level of coping and burden among caregivers Model 1
a Predictors: (constant), Ways of Coping Questionnaire-Revised subscale. SE = standard error.
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Table 7 Predictive variables between sociodemographic WOCS-R and OCBS difficulty subscale among caregivers of patients undergoing hemodialysis Predictor Burden scale Caregivers’ age Patients’ age Caregivers’ gender Patients’ gender Caregivers’ years of education Patients’ years of education Caregivers relationship to patients Years of caregiving Caregiving hours per week Caregivers live in the same home Caregivers live nearby Confrontive coping Distancing Self-controlling Seeking social support Accepting responsibility Escape–avoidance Planful problem solving Positive reappraisal
1.34 0.00 0.01 0.15 −0.08 0.01 −0.01 −0.066 0.01 −0.08 0.32 0.06 0.15 −0.06 0.35 0.04 0.02 −0.14 −0.12 −0.04
0.66 0.01 0.01 0.14 0.07 0.02 0.02 0.07 0.01 −0.06 0.11 0.05 0.17 0.15 0.18 0.17 0.13 0.16 0.15 0.15
0.09 0.16 0.11 −0.19 0.09 −0.09 −0.11 0.14 −0.13 0.33 0.14 0.10 −0.05 0.25 0.03 0.02 −0.10 −0.09 −0.03
2.05 0.68 1.48 1.05 −1.18 0.77 −0.79 −0.90 0.85 −1.19 2.96 1.09 0.86 −0.42 1.10 0.21 0.14 −0.87 −0.78 −0.24
0.04 0.50 0.14 0.30 0.24 0.44 0.43 0.37 0.40 0.24 0.00** 0.28 0.39 0.67 0.05* 0.83 0.89 0.39 0.44 0.81
OCBS = Oberst Caregiving Burden Scale; WOCS-R = Ways of Coping Questionnaire-Revised. *P < 0.05, **P < 0.01.
establishing community services that aid in reducing caregiver burden and improving caregiver well-being. The average age of the caregivers in this study was 32 years old, and almost one-half of them were males. In America, 51.0% of caregivers were between the ages of 18 and 498; this group represents a young generation of caregivers of parents. This is most probably so because 41.8% of the Jordanian population are between 20 and 49 years old27 and because under a Jordanian custom, children provide direct care to their ill family members. Males usually provide help with transportation, heavy lifting, running errands, and bathing male patients while females have other household responsibilities. Although caregivers are found across the age span, the effect of caregiving on this mostly young group in Jordan has not been studied. Surveys in the United States8 report that caregiver
individuals aged 18–29 are in the poorest physical health, followed by individuals aged 30–40. Caregiver individuals younger than 45 showed the greatest emotional health deficit compared with noncaregivers in the same age group. Dellmann-Jenkins et al.28 interviewed caregivers between the ages of 18 and 40 years old and reported both positive and negative outcomes. The positive outcomes included remembering loved ones, gaining self-respect, and keeping patients at home longer. The negative outcomes comprised difficulties with dating, marriage, and job-related problem such as relocating. Emotional support for this young group of caregivers was cited as the most beneficial service. Typically, young males or females in Jordan are expected to build a career and start a family. In this study, 46% of the participants were either sons or daughters committed to providing care to their parents.
Table 8 Multiple regression analysis: sociodemographic variables and caregiver burden Model 1
a Predictors: (Constant), sociodemographic and caregiver burden. SE = standard error.
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Thirty-seven per cent of those caregiving individuals were not employed because they required 50 hours a week for providing care. Becoming full-time and part-time caregivers inevitably have delays with their education, marriage, and parenthood. Consequently, this affects their career growth and financial stability, which will influence their levels of burden. Although this study does not discuss the perceived burdens on their unpaid caregivers, Suri et al.29 did report that patients who were enrolled in Frequent Haemodialysis Network trials perceived a significant amount of burdens on their caregiver. The patients with paid caregivers were found to have more “comorbidity, worse quality of life, more depression and lower functioning than those who reported having no unpaid caregiver” (p. 2321) and had a negative perception of their family relationship.30 Compared with the average income of the patient, the financial burden of both patients receiving hemodialysis and their caregivers in Jordan is indeed high. Although this study did not look into the patients’ and caregivers’ incomes, a recent study published in 2015 indicated that the monthly income of 64% of the 244 patients who participated in the study was below $210.31 This makes it difficult for the patient to hire an out-ofpocket caregiver. In addition to the high cost of a paid caregiver and low patient income, the expectation of Jordanian culture is that the family is responsible for providing the caregiving task and to cutting down on caregiving costs.18 Providing optimal care for the patient and the caregiver financial reimbursement strategies for caregiver are recommended. This study also found that tasks the participants rated as difficult were similar to those reported by caregivers of patients with heart failure and stroke. Caregivers of patients with heart failure perceived both household tasks and managing behavioral problems related to moodiness and irritability as difficult.12 Stroke caregivers perceived communication and behavior problems as most problematic.32 The burden of caregivers is far reaching; hemodialysis nurses should address this in counseling sessions and encourage them to make arrangement to allow for someone else to assume care for a period of time on a regular basis so they can get some rest and enjoy some leisure time. In this study, the burden of a patients’ behavioral symptoms was influenced by 3 things: (a) the relationship between the caregiver and the patient as a result of caregiving; (b) end-stage renal disease and lengthy treatment to sustain life; and (c) other psychosocial behaviors, such as lifestyle change. These 3 issues that were found to contribute to caregivers’ burden lead to our recommendation that health-care providers assess the family caregiver’s knowledge and skills they utilize to cope and direct them Hemodialysis International 2016; 20:84–93 8
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to the appropriate community service. In addition, assessing the social and psychological support available to the patient and caregiver help to ensure patient safety and minimize caregiver burden. The coping strategies used by caregivers to handle the stress of caring for patients undergoing hemodialysis were assessed in this study, which found that problem-focused strategies, like positive reappraisal, were the most preferred method. Positive reappraisal includes a religious dimension that caregivers relied on when experiencing burden. It created a positive meaning for spiritual and personal growth, reflected in statements such as “My faith in God became stronger and I prayed.” Although problemfocused strategies are common coping strategies due to their more effective and lasting outcomes,33 this study found that caregivers also used emotion-focused coping strategies in regard to burden, such as seeking social support and self-controlling. Caregivers’ recognition of burden level guides them to alleviate burden through available resources, especially close social relationship. This finding is similar to findings by Kim et al.34 and Papastavrou et al.,35 who reported that caregivers of dementia patients with high burden score tended to employ emotion-focused coping. Practicing self-control is both a problem-focused and emotion-focused strategy, which Lazarus33 considered as strategies to regulate a person’s feelings and actions. Self-control strategies help caregivers contend with emotions and negative behaviors in challenging caregiving situations. There does not seem to be any previous studies that have examined self-control in relation to burden symptoms experienced by caregivers of patients undergoing hemodialysis. This study indicated that self-control is beneficial in coping with stressful situations and may help to explain how caregivers are able to adapt to their role and to perceive their role differently. However, self-control is only effective and consistently maintained with adequate social support. The results of this study suggest that intervention programs are needed to tailor each intervention to meet the needs and coping strategies of the caregivers, by teaching them more effective ways of handling stress. Other findings in this study were that living with patients and the self-controlling subscale were the only predictors of burden. This finding may be related to demands of caregiving. Caregivers who are family members often live with patients and spend more hours in providing care and feeling responsible for the patients, which results in them experiencing a high level of physical and emotional burden. However, Laidlaw et al.36 reported that caregivers who lived apart from patients had a similar stress level. Health-care workers should empower both 91 Hemodialysis International 2015; ••:••–••
patients and caregivers with accurate knowledge about the disease, treatment, and prognosis. Measures to decrease stressors for caregivers may include identifying an access to seek information and help as well as establishing a system of frequent follow-up by social workers and community nurses. Watts and Teitelman37 reported that a family caregiver can find restorative mental breaks from formal respite services. To increase the chance for effective coping, it is important to refer a short-term (respite) home caregiver to provide patient care and help with house work while the primary caregiver is away. It may also be beneficial for this respite caregiver to provide other support services as well. The caregivers’ other sociodemographic characteristics, including age, gender, years of caregiving, and relationship to patients, were not predictors of burden. These variables explain a small percentage, nearly 11.4%, of the variance in the burden level. This is inconsistent with previous studies performed by Tudoran and Tudoran,38 who found that the perceived burden level was higher for woman and younger groups and lower for subjects with both higher education and income. The explanation of the findings in this study is that in the Jordanian culture, siblings, children, and spouses assist with caregiving and, as a result, may take on part of the burden. This finding, however, can be related to factors other than sociodemographic variables or may obscure the sociodemographic variables as a predictor of burden. Special groups such as women and young adults should also be assessed to identify their burdens, stress level, and plan interventions that help them in coping with their responsibilities as caregivers.
CONCLUSION The findings of this study indicate that self-control strategies played an important role in caregivers’ coping. However, caregivers found that prayers and faith were helpful in coping with their burdens. As such, this study will make a positive contribution to future research on caregivers’ experience in Jordan specifically in Arab countries in general. Further research describing the lived experiences of caregivers of patients undergoing hemodialysis is still required because it would provide deeper understanding of how living with patients could increase the level of caregivers’ burden.
ACKNOWLEDGMENTS The author would like to thank the patients, the caregivers, and health-care professionals and administration for their cooperation. 92 Hemodialysis International 2015; ••:••–••
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DISCLOSURES The author confirms that the study was not supported by any grant and there is no conflict of interest. For funding information, see “The Global Forum on Home Hemodialysis: Sponsorship and Disclosure Statements.”
Manuscript received January 2015; revised April 2015.
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