Estimating the caregiver burden and its nature among caregivers of children with Leukemia at Muhimbili National Hospital Oncology unit in Dar-es-salaam

Abstract

ABSTRACT Background: leukemia is a leading concern in pediatric cancers, with 694 incidence and a mortality count of 527 cases with five-year prevalence recorded was 1,500 cases (2.5 per 100,0000) (1). Despite the advancement in cancer treatment, leukemia demands close and prolonged care from family caregivers hence adding a burden on caregivers. This includes physical, mental, social, or financial strain which happens when the demand for care exceeds their available resources or social support. This in turn tends to affect the quality of care for children with leukemia. Despite these detrimental impacts the disease poses to caregivers, little has documented about the estimated caregiver burden and its nature in Tanzania. Aim of the study: To Estimate the caregiver burden and its nature among caregivers of children with leukemia at Muhimbili National Hospital Oncology Unit in Dar-es-salaam. Methodology: This quantitative cross-sectional study used simple random sampling to obtain 104 Primary caregivers of children undergoing leukemia treatments at MNH pediatric oncology unit. Data were collected through a researcher-administered questionnaire and a modified ZBI scale with 22 items, and SPSS version 23 was used to analyze the data. Descriptive statistics used to analyses social demographic, clinical characteristics and nature of the caregivers while Logistic regression (Bivariate and multiple analysis) were employed to identify factors associated with caregiver burden. Results; Caregivers had a mean age of 30.5± 5.6SD, with most of them being female 70(67.3%). 60 (57.7%), experience a moderate to severe burden (47.9 ±12.3SD). Economic and social burdens were identified, with 54.8% of caregivers frequently facing financial strain while 53.8% lack family support and 62.5% lack support from friends. The age of the caregiver, relationship with the child, number of hospital admissions, inadequate social support and financial strain were associated with the caregiver’s burden (aOR = 0.25, 95% CI: 0.066 – 0.971, p = 0.045), (aOR = 0.093, 95% CI: 0.09 – 0.96, p = 0.045), (aOR= 5.2, 95% CI: 1.29 - 7.94, p = 0.020), (aOR = 1.25, 95% CI: 1.066 – 2.917, p = 0.037), (aOR = 0.65, 95% CI: 0.081 – 0.849, p = 0.032) respectively. Conclusion; This study find a high prevalence of burden (moderate to severe) among caregivers of children with leukemia. Economic and social aspects are identified as the nature of the burden. The age of the caregiver, relationship to the child, number of hospital admissions, inadequate social support and financial strains were significantly associated with caregiver burden. This study recommends a comprehensive care plan for caregivers, including regular burden assessments, and financial and social support to alleviate the burden on caregivers. Key words: Caregiver burden, children, leukemia, nature and ZBI scale