Abstract
Introduction: Advances in cancer diagnosis and treatment have resulted in an increase in the prevalence and a longer life expectancy. A cancer patient's family caregiver is one of the most important components of the patient's wellbeing. Consequently, family members have been identified as co-sufferers in the fight against malignant disorders.
Materials and Methods: Observational cross-sectional study conducted at specialized oncology public outpatients’ clinics in Khartoum State, aimed at assessing caregiving burden among the primary family caregivers of cancer patients. To collect important data about both cancer patients and family caregivers, validated and structured questionnaires and a checklist were used. A systematic random sample was used to enrol 143 caregivers for cancer patients.
Results: Cancer patients were frequently females (56.6%), with 32.2 percent being between the ages of 51 and 65. Breast cancer and leukaemia were the most common kinds of cancer among individuals, accounting for 11.9 percent each. In terms of family caregivers, 54.5 percent were females with an average age of (37.7) years. Approximately half of them were cancer patients' offspring. The majority of family caregivers were married and had received secondary and/or basic education. Mean cumulative caregiver reaction assessment score was 39.8 out of 60, which revealed considered degree of sensible caregiving burden. Having more children and lower educational level were related positively to estimated caregiving burden.
Conclusion: Findings point to high proportions of raised level of caregiving burden.
Some family caregivers’ characteristics have a role as determining factors in generating family caregiver burden.
Keywords: Cancer; Caregiver Burden; Family Caregiver
Abbreviations
CRA: Caregiver Reaction Assessment; SD: Standard Deviation; SPSS: Statistical Package for the Social Sciences
Introduction
Lately, findings of descriptive surveys implemented in Sudanese hospitals had shown the importance of cancer as the third chief cause of mortality, accounting for 5% of all deaths. Malignant disorders contribute to around 60,000 deaths every year. The incidence of cancer in Sudan shows an increasing pattern; therefore, an increasing number of populations are expected to take the role of principal caregivers in the near future [1,2].
Besides, the progress in cancer management has given rise to increased numbers of patients and prolonging of their life expectancy [3]. A family caregiver of a cancer patient is considered as one of the vital building blocks in a patient’s well-being. The role of family caregiving for reducing the expenditure of the total disease cost is an additional important factor [4,5].
The word “caregiver”, is a new terminology that covers a wide variety of practices and circumstances. Caregiving may possibly be informal; comprising caring for a family member or loved one within a home-based setting, or formal caregiving which is provided by medical professionals within an institutional setting [6,7].
Quite a lot of descriptions were established with the aim of defining the caregiver burden which was challenged by a relative lack of consistency. This fact creates some sort of difficulty in summarising the concept of caregiver burden. The worst feature for family caregiver is that the person receives no financial benefit for offering care. George and Gwyther defined ‘caregiver burden’ as “encompassing the physical, psychological, emotional, social and financial stresses that individuals experience due to providing care”. From time to time, the term informal caregiver is used to stress this conception. Classically, the family caregiver has a primary role of supporting the care recipient physically and emotionally. However, supporting the family caregiver is an important determinant of care quality in many places [8,9].
Despite a lack of homogeneity about the caregiving concept, still various models and theories are adopted to illuminate the interaction of diverse variables through the caregiving process and to understand the caregiver burden. Generally, those variables are categorised into the following classifications: background variables, caregiver needs and demands, the psychological perception of caregivers for their own needs, the possible intermediaries between caregiver perception and actual outcomes, and finally the consequences of caregiver loads [10].
In respect to cancer family caregivers’ conventional characteristics; generally speaking, it is not difficult to conclude that most of the caregivers are female, a first degree relative to the patients and most of the time they are older than 50 years [11].
Literature revealed family caregiver characteristics of cancer patients by means of the following; the majority of caregivers (63.5%) was females with mean age was 54.1 years. Frequently reported types of cancer, involved in the studies, were breast, prostate, gastrointestinal, colon, and lung. Concerning the caregiver relationship to the patient, most caregivers seemed to be spouse/partner, mature child (regularly daughters), parent, sibling, son/daughter-in-law, grandchild, niece, or friend [12].
In Ireland, a study was conducted among colorectal cancer patients and their family caregiver to identify extrapolative patients and caregivers’ factors which contributed to caregiver burden. Those factors were classified into three main groups: caregiver characteristics, patient characteristics, and care-associated factors. Similarly, caregiver’s burden was categorised into four core groups: family and social support, economic impact, physical health burden, and load over day-to-day activities. Significant discrepancy was detected between the four burden groups. The most adversely affected caregiving burden dimension was burden related to change regarding routine daily activities. Then it was followed by economic consequences and effect over caregiver wellbeing. The least affected dimension was the burden related to insufficient social support. Patient’s characteristics were the key leading determinant of caregiving burden, explaining 14% and 22% of the burden. Careassociated elements came just after and caregivers’ characteristics were the least important determinant of caregiving burden [13].
The aim of this study was to assess caregiving burden among the principal family caregivers of cancer patients.
Materials and Methods
Study design
A quantitative, descriptive cross-sectional design was applied. The study was conducted at specialized oncology public outpatients’ clinics in Khartoum State. Actually, over 80% of cancer patients in Sudan are treated on a regular basis at the Khartoum Oncology Hospital [1,14].
Study participants
The study included 143 caregivers whose patients had been diagnosed with cancer at least three months before the data was collected. By means of using cancer national registry, patients’ selection was done by systematic random sampling. At that point principal caregiver was acknowledged as such by the cancer patient as, (the person who is mostly in charge for their unpaid, informal care).
Data collection and measures
A face-to-face interview was administered the same day consent was attained. The following instruments were employed in the interviews: Socio-demographic Questionnaire and Caregiver Reaction Assessment (CRA). Furthermore, the medical files of patients were checked in order to document their medical information.
A structured adapted questionnaire was used to collect general data about family caregivers and cancer patients. The questionnaire had two main parts; the first part comprised demographic, social and economic information related to the family caregiver. The second part contained demographic and medical information about cancer patients. Clinical information about disease type, disease stage, and management modality was abstracted from patients’ medical files.
Caregiver Reaction Assessment (CRA) is an assessment tool developed by the work of Given et al. at Michigan State University in 1992. Their effort aimed to achieve multidimensional instruments suitable for estimating burden of family caregivers of people suffering from chronic physical and psychological disorders [15,16]. (CRA) explore five domains of caregiving burden, specifically: self-esteem, lack of family support, impact on finances, impact on daily schedule, and impact on health [17,18]. The tool is acknowledged as a validated and well-structured tool to assess caregiver burden in a variety of communities and ethnic groups, with high sensitivity to identify changes over time [19,20].
Data management and analysis
For data entry and statistical analysis, the Statistical Package for the Social Sciences (SPSS)® version 20 was utilized. The sociodemographic features and caregiving burden cancer patients and primary carers were characterized using percentages, frequencies, means, and standard deviations. A two-sided P value of less than 0.05 was deemed statistically significant.
Results
Cancer patients’ characteristics
Females made up a modest majority of cancer patients (56.6%) in the study sample when the cancer distribution was characterized by gender. The female to male ratio was 1.3:1, while in actuality, the gender distribution of cancer in Sudan was practically identical. The age distribution in the study samples mirrored that of Sudanese cancer patients of the same age. The age groups in the middle were the most affected [1,21,22] (Table 1).
Variable
Category
Count (%)
Mean (SD)
Age
0-17
9 (6.3)
49.1 (19.2)
18-34
25 (17.5)
35-50
36 (25.2)
51-65
46 (32.2)
> 65
27 (18.9)
Gender
Male
62 (43.4)
-
Female
81 (56.6)
Table 1: General characteristics of cancer patients, Khartoum Oncology Hospital, 2018 (n=143).
Breast cancer and leukaemia were determined to be the most common cancer types, followed by lymphoma, gastric, and endometrial cancer. Similarly, with a few exceptions, this distribution replicated the typical distribution of cancer in Sudan's general population as shown by the Cancer Registry [22,23] (Table 2).
Variable
Category
Count (%)
%
Type of cancer
Breast cancer
17
11.9
Liver cancer
4
2.8
Leukemia
17
11.9
Lymphoma
14
9.8
Ovarian cancer
11
7.7
Endometrial cancer
12
8.4
Gastric cancer
9
6.3
Colon cancer
7
4.9
Rectal cancer
5
3.5
Malignant melanoma
5
3.5
Cervical cancer
3
2.1
Prostate cancer
3
2.1
Nasopharyngeal cancer
4
2.8
Oral cavity cancer
4
2.8
Multiple myeloma
3
2.1
Others
25
17.5
Stage of disease
Stage I
32
22.9
Stage II
30
21.4
Stage III
32
22.9
Stage IV
46
32.9
Type of treatment
Chemotherapy
76
53.9
Radiotherapy
6
4.3
Surgery
2
1.4
Chemotherapy + Surgery
23
16.3
Chemotherapy + Radiotherapy + Surgery
6
4.3
Other
28
19.9
Table 2: Disease related characteristics of cancer patients, Khartoum Oncology Hospital, 2018 (n=143).
Family caregivers’ characteristics
Similar to cancer patients’ gender classification, most of the family caregivers were females 54.5%, and 47.6% were young adults aged between 18 and 34 years old. The average age of family caregivers was 37.7 years. The original residence for 35.7% of family caregivers was Khartoum state. The remaining two thirds of family caregivers came from other states, mainly Aljazeera and Blue Nile states 24.5% and Kordofan 19.6%. A relatively large ratio (44.1%) of family caregivers lived with their relatives in Khartoum. Approximately 30% lived in their own houses, and 16.1% lived in rented accommodation, (Table 3 and 4).
Variable
Category
Count (%)
Mean (SD)
Age
18-34
68 (47.6)
37.7 (13.2)
36-50
48 (33.6)
51-65
24 (16.8)
> 65
3 (2.1)
Gender
Male
65 (45.5)
-
Female
78 (54.5)
Original residence
Khartoum
51 (35.7)
-
Darfur
14 (9.8)
Kordofan
28 (19.6)
East states
7 (4.9)
Central and southern states
35 (24.5)
Northern states
8 (5.6)
Table 3: Demographic characteristics of family caregiver of cancer patients, Khartoum Oncology Hospital, 2018 (n=143).
Variable
Category
Count (%)
Mean (SD)
Relation of caregiver to cancer patient
Father
6 (4.2)
-
Mother
16 (11.2)
Son
40 (28.0)
Daughter
32 (22.4)
Brother
12 (8.4)
Sister
17 (11.9)
Husband
7 (4.9)
Wife
13 (9.1)
Educational level
Illiterate
29 (20.3)
-
Khalwa
11 (7.7)
Primary
30 (21.0)
Secondary
42 (29.4)
University
7 (4.9)
Post Graduate
24 (16.8)
Marital status
Single
42 (29.4)
-
Married
90 (62.9)
Divorced
1 (0.7)
Widowed
10 (7.0)
Number of children
1-2
22 (24.2)
3.2 (2.8)
3-5
35 (38.5)
> 5
34 (37.4)
Table 4: Social characteristics of family caregiver of cancer patients, Khartoum Oncology Hospital, 2018 (n=143).
Estimated caregiving burden
With regards to caregiver burden, 91.6% of family caregivers reported that their activities centred on caregiving duties, 89.5% eliminated things from their schedules since starting caring for the cancer patient, and 82.5% had less visits to their families and friends. The average score of Caregiver Reaction Assessment scale was 39.8 out of 60, (Table 5 and 6).
Item
Disagree
Neutral
Agree
Mean (SD)
Count (%)
Count (%)
Count (%)
Felt privileged for caregiving
135 (94.4)
6 (4.2)
2 (1.4)
1.3 (0.63)
Others dumped caring onto me
82 (57.3)
2 (1.4)
59 (41.3)
2.6 (1.7)
Financial resources are adequate
65 (45.5)
16 (11.2)
62 (43.4)
3.0 (1.3)
Activities centred around caregiving
9 (6.3)
3 (2.1)
131 (91.6)
4.5 (1.5)
Difficult to obtain family help
90 (62.9)
0 (0.0)
53 (37.1)
2.6 (1.5)
Resent having to take care of patient
130 (90.9)
2 (1.4)
11 (7.7)
1.5 (0.98)
Stopped work to help patient
36 (25.2)
22 (15.4)
85 (59.4)
3.6 (1.4)
Really wanted to care for patient
142 (99.3)
0 (0.0)
1 (0.7)
1.2 (0.47)
Visited family and friends less
21 (14.7)
4 (2.8)
118 (82.5)
4.2 (1.3)
Never be able to repay patients
137 (95.8)
2 (1.4)
4 (2.8)
1.3 (0.65)
Family worked together at caregiving
109 (76.2)
3 (2.1)
31 (21.7)
2.0 (1.3)
Eliminated things from schedule
14 (9.8)
1 (0.7)
128 (89.5)
4.4 (1.1)
Family abandonment
91 (63.6)
5 (3.5)
47 (32.9)
2.4 (1.5)
Felt good about caring
136 (95.1)
4 (2.8)
3 (2.1%)
1.5 (0.66)
Difficult to find relaxation time
44 (30.8)
6 (4.2)
93 (65.0)
3.6 (1.5)
Total scale
39.8 (8.1)
Table 5: Estimated caregiving burden among family caregiver of cancer patients using Caregiver Reaction Assessment (CRA), Khartoum Oncology Hospital, 2018 (n=143).
Item
Category
Caregiving burden
P-value
Mean
SD
Caregiver gender
Male
41.1
7.7
0.562
Female
38.7
8.2
Marital status
Single
38.6
8.5
0.203
Married
39.9
7.8
Divorced
33
7.6
Widowed
44.2
7.6
Having children
Yes
40.9
8.1
0.036
No
37.9
7.7
Educational level
Illiterate
44.7
7.9
0.001
Khalwa
42.1
5.5
Primary
39.1
7.5
Secondary
39.1
7.5
University
39.9
10.2
Post Graduate
35
7.5
Occupation
Officer
35.3
7.5
0.005
Farmer
44.5
9.8
Merchant
38.2
8.6
Free worker
42.4
6.6
Household
38.3
7.7
Student
38.7
13.2
Caregiver monthly gross income
0-450
39.2
8.7
0.275
451-1500
41.2
7.6
1501-3000
41.2
7.4
3001-5000
36.7
9.2
Table 6: Chi square results to test significance between estimated caregiving burden and family caregiver characteristics, Khartoum Oncology Hospital, 2018 (n=143).
Discussion
The majority were middle-aged family members, with an average age of 37.7 years. Many research, done in a variety of countries, reported that the mean age of family caregivers' equivalents has risen to 50 years or more [11,12,24]. Limited exemptions in studies where the average age of the family caregiver was about 42 years [25]. The discrepancy may be explained by divergence in social norms and familial milieu.
Females, as expected, played a prominent role as family caregivers, as evidenced by several studies conducted in various parts of the world [12,13,18,26] Those findings are in accordance with the woman's dominant social role in practically all cultures, regardless of community structure or country economic condition.
In the same vein, this study found that over half of the family caregivers (50.4%) were patients' descendants, and 15% were patients' spouses. Several studies, on the other hand, have shown that patients' partners and spouses are the primary family caregivers [24,26] This also demonstrates inconsistency in social customs influencing family caregivers characteristics.
According to the findings of this survey, the majority of family caregivers were married and had received secondary and/or basic education. The same conclusion had been reached by other investigations [6,16,27].
About one third 32.9% of study participants stated feeling of being left behind by their families, compared to nearly two thirds reported the opposite. Feeling of abandonment is important contributor of escalation of diverse caregiver burden. Average aggregate score of caregiver reaction assessment was 39.8 out of 60, which reflected high degree of caregiving burden.
Higher estimated caregiver burden was associated with those who have more children and lower educational grade. In literature, living with young children appears as debateable determinant of caregiver burden [28]. This enlightens the difficulty in the process of understanding of root causes of caregiving burden. Therefore, literature related to caregiver burden is rich with construction of hypothetical models endeavouring to aid simplification of caregiving phenomena [10,29]. Notwithstanding, patients and family caregiver demographic and socioeconomic factors were correlated to higher scores of caregiving burden [30].
The quantitative cross-sectional design of the study was not satisfactory regarding some concerns. It was not sufficient to give in-depth knowledge about the impact caregiving burden over family caregiver. As well to the known weakness of cross-sectional design in validating association between dependent and independent variables, inferences shown by this study should be read carefully.
Conclusion
Results showed the classical picture of family caregivers of cancer patients is a married middle age patient ancestor who received secondary education. Also study revealed the family caregivers of cancer patients are challenging with sensible caregiver burden. Thus, prompt efforts are necessary to build up valuable preventive and alleviative interventions for this relatively frequent but; underestimated problem.
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