Of the caregivers included in the study (n: 222), it was found that 47.3% were in the 40-61 age group, 64.4% were women, 73% were married, 37.8% were graduates of higher education, 31.5% were housewives, 68.9% did not have a job, 73.9% had moderate economic status and 86.5% had social security. It was found that 69.8% of the caregivers had nuclear families, 72.5% had children and 60.4% were not directly responsible for child care. It was found that 77.9% of the caregivers did not have any chronic diseases, 40.1% cared for their spouses, 33.8% provided care exceeding 19 hours per day, 55% provided care for their patients for 3 to 10 months, 53.6% received help for caring for their patients, 51.4% had patients with a diagnostic duration of 3 to10 months, 60.4% had patients with metastasis, and 23% of the patients had a performance status of 80%.
It was determined that the caregivers conducted the follow-up of their patients’ medical problems, arranged their nutrition, medication and appointments, helped with the household chores (shopping, childcare, payment of bills), gave their patients emotional support, helped with their exercises and provided massage. However, it was found that the patients in the sample group were able to perform their own personal care easily because of their high performance status (Table 1).
Table 1. Caregiver's Home Care Practices
Home Care Practices
|
Yes
|
Sometimes
|
No
|
Medical Care Management
|
N %
|
N %
|
N %
|
Follow-up of medical problems
|
181 81.5
|
22 9.9
|
19 8.6
|
Follow-up of medication
|
197 88.7
|
16 7.2
|
9 4.1
|
Arranging appointments
|
204 91.9
|
8 3.6
|
10 4.5
|
Provision of prescribed drugs and medical equipment
|
200 90.1
|
15 6.8
|
7 3.2
|
Preparation of special diet requirements
|
169 76.1
|
24 10.8
|
29 13.1
|
Non-Medical Care Management
|
|
|
|
Managing household chores during the care process (cleaning, repair)
|
163 73.4
|
38 17.1
|
21 9.5
|
Helping with duties related with children during the care process (transportation to school, parent meetings etc.)
|
87 39.2
|
16 7.2
|
119 53.6
|
Doing necessary shopping (clothing, nutrition, special requirements etc.)
|
186 83.8
|
27 12.2
|
9 4.1
|
Taking responsibility in the transportation of the patient to hospital
|
208 93.7
|
9 4.1
|
5 2.3
|
Paying the bills of the patient (electricity, water, telephone, custom invoices, house rents etc.)
|
136 61.3
|
23 10.4
|
63 28.4
|
Having another job during the care process
|
67 30.2
|
12 5.4
|
143 64.4
|
Financial impact on the care process (loss of job, decrease in job continuity, travel or accommodation fees)
|
131 59.0
|
23 10.4
|
68 30.6
|
Provision of Patient Personal Care
|
|
|
|
Oral care
|
89 40.1
|
38 17.1
|
95 42.8
|
Assisting with body care (bathing)
|
|
|
|
Foot care
|
93 41.9
|
46 20.7
|
83 37.4
|
Maintenance of urinary catheter
|
36 16.2
|
10 4.5
|
176 79.3
|
Maintenance of the feeding tube (Feeding, PEG)
|
30 13.5
|
4 1.9
|
188 84.7
|
Supporting the patient emotionally
|
199 89.6
|
8 3.7
|
15 6.8
|
Performing tube feeding (PEG)
|
23 10.4
|
2 0.9
|
197 88.7
|
Maintenance of colostomy, ileostomy or urostomy
|
24 10.8
|
5 2.3
|
193 86.9
|
Maintenance of tracheostomy
|
18 8.1
|
4 1.8
|
200 90.1
|
Assisting the patient while walking or with in-bed exercises
|
123 55.4
|
44 19.8
|
55 24.8
|
Wound or catheter dressing
|
87 39.2
|
17 7.7
|
118 53.2
|
|
68 30.6
|
24 10.8
|
130 58.6
|
Injection (insulin, blood thinners, blood-forming drugs, etc.)
|
114 51.4
|
43 19.4
|
65 29.3
|
It was found that while the total score the caregivers obtained from the MSPSS was 61.29 ± 17.27; the total score they obtained from the home care practices questionnaire was 28.88 ± 7.72, and the total score obtained from the ZBI was 29.11 ± 14.58 (Table 2).
Table 2. Caregivers’ Descriptive Statistics of the Multidimensional Scale of Perceived Social Support (n: 222)
As seen in Table 3, it was found that there was a weak and negative correlation between the perceived social support total scores and caregiver burden scores of caregivers (p <.01). There was a weak and negative correlation between the MSPSS family and significant other sub-dimension scores and caregiver burden scores; however, the relationship was not significant (p> .05), while the friend sub-dimension scores indicated a weak, negative but statistically very significant correlation (p <.01). A statistically significant positive but weak correlation was found between Karnofsky performance status scores and caregiver burden scores (p <.01). As the performance scores of the patients decrease, caregivers’ burden scores increase. When the relationship between Home Care Practices Questionnaire Scores and ZBI scores were examined, a moderately positive, significant correlation was found (p <.001). It was found that there was no significant relationship between the medical and non-medical care management sub-dimension scores and caregiver burden scores (p> .05). However, a moderately positive and highly significant correlation was found between the provision of patient personal care sub-dimension scores and caregiver burden scores (p <.001). It was found that as the total score of home care practices and the provision of patient personal care sub-dimension scores increased, caregiver burden scores also increased.
Table 3. The Relationship between the Multidimensional Scale of Perceived Social Support, Karnofsky Performance Status Scale, Home Care Practices and Zarit Caregiver Burden Scale Scores of Caregivers (n: 222)
Scale and Sub-dimensions
|
Zarit Caregiver Burden Scale
|
|
r
|
p
|
1. Multidimensional Scale of Perceived Social Support (Total)
|
-.18
|
.009
|
MSPSS Sub-Dimensions
|
|
|
A. Family
|
-.13
|
.051
|
B. Friend
|
-.22
|
.001
|
C. Significant Other
|
-.09
|
.208
|
2. Karnofsky Performance Status Scale
|
.19
|
.004
|
3 Home Care Practices Questionnaire Form
(Total)
|
.30
|
.000
|
Sub-Dimensions
|
|
|
Medical Care Management
|
.05
|
.454
|
Non-Medical Care Management
|
.13
|
.058
|
Provision of Patient Personal Care
|
.32
|
.000
|
A highly significant correlation was found between the diagnostic duration and the duration of care provision (r: .93, p <.001, Tolerance value: .128, VIF: 7.811), the MSPSS total scores and the friend sub-dimension scores (r: .83, p <. 001, Tolerance value: .274, VIF: 3.649) and daily care practices total score and personal care sub-dimension scores (r: .91, p <.001, Tolerance value: .158, VIF: 6.311) according to the multicollinearity statistics. In the study, the effect of the variable of the caregiver having to provide care for persons other than cancer patients on the caregiver burden was found to be marginally significant (p: .05 to .10, .05 <p <.10). The five independent variables explain the variance in caregiver burden score by 20%.
While the 1-point increase in the personal care sub-dimension scores of the home care practices questionnaire increases the caregiver burden scores by .77 points; 1-point increase in the friend sub-dimension scores of the MSPSS decreases the caregiver burden scores by -.31 points. The caregiver burden score of caregivers with fragmented family type was 4.46 points higher than those with large and nuclear families; caregivers who were responsible for their patients alone had a burden score which was 4.07 points higher than those who received support; those who provided care for patients with metastases had a burden score which was 4.07 points higher than those who provided care for patients with no metastases; and, caregivers who provided care to someone else in addition to the cancer patient had a burden score which was 3.63 points higher than those who only provided care for their patients.