The Magnitude of Care Burden and Associated Factors in Caregivers of Children with Cancer at the Country's Largest Tertiary Referral Hospital, Ethiopia: A Cross-Sectional Study

Abstract

Objectives. Many caregivers who care for their children with cancer are affected by the care burden due to the chronic nature of the disease. This study aimed to determine the burden of care level and its related factors in the caregivers of children with cancer. Methods. A facility-based, cross-sectional study was conducted at Tikur Anbessa Specialized Hospital. Children diagnosed with cancer and treated at the hospital between July 1 and August 1, 2023, and their caregivers were included. The data were analyzed using SPSS version 25. Descriptive analysis and inferential statistics were used to summarize the data and to determine the association with the dependent variable. Statistical significance was set at P < .05. Results. A total of 208 children with cancer and their caregivers were included in the study. Most children (81, 38.9%) were below 5 years of age, and 80.3% (n = 167) of the patients came from out of Addis Ababa. The most common type of childhood cancer was haemato-lymphoid cancer (n = 117, 56.3%). The mean duration of cancer care after diagnosis was 289.55 days. The median age of caregivers was 35 ± 8.7 years, most of the caregivers were parents of the child (n = 185, 88.9%), married (n = 186, 87%), had a primary level education (n = 66, 31.7), and 87.5% (n = 182) had insufficient income for the cancer treatment cost. The average caring time was 19 to 24 hours for 76.4% (n = 159) of caregivers, and more than one-fourth of caregivers (n = 57, 27.4%) intended to abandon treatment if they couldn't get support to continue the care. The mean care burden in caregivers was 65.76 ± 14 and about, 53.4% (n = 111) and 35.1% (n = 73) of caregivers had moderate and severe care burden. Binary logistic analysis showed the factors associated with an increased care burden were the caregiver's occupational status (P = .034, 95 % CI; AOR (0.064, 0.890)), lack of support from NGOs (P = .037, 95 % CI; AOR (1.053, 5.254), and insufficient monthly income for the treatment (P = .034; 95% CI; AOR (0.064, 0.896)). Conclusion. Most of the caregivers of children with cancer were parents and had insufficient income for the treatment. More than one-fourth had an intention to abandon the cancer treatment. Most caregivers had moderate to severe care burdens.

Keywords: Ethiopia; care burden inventory score; caregivers; childhood cancers; overall care burden; treatment abandonment.

Figure 1.

Diagnosis of childhood cancers.

Figure 2.

Magnitude of care burden in caregivers of children with cancer.