Family Caregivers and Caregiving Buren of Cancer Patients Khartoum State 2020

Research Article

J Fam Med. 2021; 8(10): 1282.

Family Caregivers and Caregiving Buren of Cancer Patients Khartoum State 2020

Osama E¹*, Kamil S², Hiba E¹ and Tahani M¹

1Department of Community Medicine, National University, Sudan

2Department of Community Medicine, University of Khartoum, Sudan

*Corresponding author: Elkhidir Osama, Department of Community Medicine, National University, Sudan

Received: November 11, 2021; Accepted: December 02, 2021; Published: December 09, 2021


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


CRA: Caregiver Reaction Assessment; SD: Standard Deviation; SPSS: Statistical Package for the Social Sciences


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.


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).