The Burden of Care Amongst Caregivers of Children With Chronic Kidney Disease on Dialysis at the Kenyatta National Hospital

Abstract

Background: In-children, chronic1kidney1disease (CKD) differs from that of adult people, with the most prevalent basis/roots of CKD in-children are congenital-malformations and genetic disorders. While adolescents and children make up a tiny percentage of patients having CKD, the consequences are far-reaching, not just for the child but also for the child's primary caregiver. Family caregivers take on a variety of responsibilities on management of the child’s condition while dealing with the psychological stress of caring for a chronically ill child. The burden associated with the caregiver position arises from a caregiver's negative emotional and physical reactions to the changes and pressures encountered while giving care. Healthcare professionals should therefore focus not just on the health of their patients, but also on the health of their caregivers, who are an important component of the patient’s care because, overburdened carers are unlikely to adequately meet the needs of those that they care for. Objective: To undertake an evaluation of the care1burden amongst persons who cared for children having CKD being offered dialysis at the Kenyatta National Hospital Methods: This was a descriptive cross-sectional study that was performed amongst1caregivers of1children with CKD on1dialysis at Kenyatta National Hospital. Both qualitative and quantitative methods were used. A census was done for all eligible caregivers within the study period where a total of 18 children with CKD were identified. The study tools included a self-created questionnaire on the socio-demographic data of the respondents and the Zarit Burden Interview (ZBI) tool for evaluating carer’s level of difficulty, all of which were interviewer-administered. Pretesting of the tools was done during the pilot study. The study data was analyzed descriptively utilizing SPSS version 28.0 with findings shown as frequencies and percentages. Associations were measured using fisher’s exact test. All statistical tests were assessed at 95% CI (P<0.05). Results:The median age among caregivers was 42(IQR: 31 – 50) years, 12(66.7%) were female, 13(72.2%) had secondary education as their highest level of education, 14(77.8%) were married. Most of the caregivers, 12(66.7%) of the caregivers were self-employed, 8(44.4%) had monthly income which was barely adequate for basic family needs, 17(94.4%) of caregivers were parents to the patients. The characteristics of the patients revealed that the median age was 16(IQR:11 – 18) years, 11(61.1%) were male,15(83.3%) had acquired CKD. The median duration of illness was 27(20 – 60) months, 10(55.6%) had pre-existing comorbidity.The average burden of care score was 46.27 (SD±14.5), 8(44.4%) of the caregivers had mild to moderate burden, 6(33.3%) had moderate to severe burden while 4(22.2%) had severe burden. Monthly income and duration of illness were key factors significantly associated with burden of care. Conclusion and recommendations: The findings have established that all of the caregivers have at least mild care burden with majority having moderate to severe burden of care. Duration of illness and monthly income have been identified as key factors associated with burden of care. Therefore, healthcare providers ought to communicate clearly about the condition of the child and the level of care needed to achieve improved health outcomes as well as ensuring that insurance covers most common and costly tests and investigations done.