Burden and associated factors among caregivers of children with sickle cell disease attending Tororo General Hospital

Abstract

Introduction: Caregiver burden is an important concept in medicine and occurs because of looking after patients with chronic conditions. This concept has never been addressed in rural primary care settings like Tororo General Hospital. Caregiving is the cornerstone of adequate healthcare provision because without it, caregiver’s and patient’s physical, emotional, social and psychological needs are tremendously affected.

Objectives: To determine the level and describe the factors associated with high level of burden among caregivers of children with sickle cell disease attending Tororo General Hospital.

Methods: This was a descriptive cross-sectional study using quantitative methods. A total of 248 caregivers were consecutively selected from the weekly outpatients’ sickle cell disease clinic to participate in the study. Data was collected using the Zarit burden interviewer administered questionnaire and analyzed using STATA version 17. The level of burden was determined using Zarit Burden Interview tool and variables with P-value < 0.2 in bivariate analysis were entered into the multivariate analysis to determine the factors associated with high level of burden.

Results: The level of caregiver burden was high at 96.8%. Residence (PR, 95% CI: 0.89;0.80-0.99 p=0.025) and effect of caregiving on job (PR, 95% CI: 1.05;1.01-1.08 p=0.006) were found to be associated with high care giver burden.

Conclusions: The level of caregiver burden in Tororo General Hospital was high, and the significant factors associated with this level of burden were residence and caregiver effect on job. The study adds on the pool of knowledge for clinicians to understand caregiver burden and its effects on the carer and the child with sickle cell disease.