Hemophilia Caregiver Burden in a Low Socioeconomic Region of Turkey.

IF 1.3 Q3 PEDIATRICS
Gizem Zengin Ersoy, Mehtap Ertekin, Gürcan Dikme
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Abstract

Objective: This study aims to evaluate the caregiver burden of parents of hemophilia patients and related factors in the southeast region of Turkey, where access to a regular healthcare facility is more complicated than in other areas.

Materials and methods: Twenty-six caregivers of patients with hemophilia were consecutively enrolled in this non-interventional study. Caregiver burden is measured using the "HemophiliaAssociated Caregiver Burden Scale" (HEMOCAB).

Results: Hemophilia affects 65.4% of caregivers emotionally, and 92.3% feel the burden caused by financial problems related to hemophilia. The perception of the patients by caregivers was negative in the groups of low educational degree and unstable employment status (P = .037 and P = .017, respectively). The employment status and job changes influence the caregiver burden because of hemophilia (P = .034 and P = .001, respectively). The groups of those who spent greater than 5 hours for transportation to the hemophilia treatment center (HTC) had a higher burden (P = .001). Multiple linear regression analysis analyzed variables affecting HEMOCAB, frequency, and burden total scores. The model created with the burden total score was statistically significant (P = .047).

Conclusion: The main factors affecting caregiver burden were educational status, working conditions, and economic difficulties, as well as the length of infusion times and transfer to HTCs. There is a need to develop socioeconomic policies related to these problems.

土耳其低社会经济区的血友病护理人员负担。
目的:本研究旨在评估土耳其东南部地区血友病患者父母的护理负担和相关因素,该地区的常规医疗机构比其他地区更复杂。材料和方法:26名血友病患者的护理人员被连续纳入这项非介入性研究。护理人员负担采用“血友病相关护理人员负担量表”(HEMOCB)进行测量。结果:65.4%的照顾者在情感上受到血友病的影响,92.3%的照顾者感受到与血友病相关的经济问题带来的负担。在教育程度低和就业状况不稳定的人群中,护理人员对患者的认知是负面的(分别为P=0.037和P=0.017)。由于血友病,就业状况和工作变化会影响照顾者的负担(分别为P=0.034和P=0.001)。那些花费超过5小时前往血友病治疗中心(HTC)的患者负担更高(P=0.001)。多元线性回归分析分析了影响HEMOCB、频率和负担总分的变量。用负担总分创建的模型具有统计学意义(P=.047)。结论:影响照顾者负担的主要因素是教育状况、工作条件和经济困难,以及输液时间和转移到HTCs的时间。有必要制定与这些问题有关的社会经济政策。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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