Department of Public Health, Ataturk University Medical Faculty, Turkey.
Department of Public Health, Ataturk University Medical Faculty, Turkey.
J Pediatr Nurs. 2019 Sep-Oct;48:e21-e26. doi: 10.1016/j.pedn.2019.05.017. Epub 2019 Jun 5.
This study aimed to determine the burden of care and the quality of life in caregivers of children with FMF.
A cross-sectional study was conducted. Caregivers of the 109 children with FMF followed by a pediatric nephrology department were invited to join the study. Besides demographic information, the Zarit Care Burden Scale (ZCBS) and the World Health Organization Quality of Life Questionnaire-Short Form (WHOQOL-BREF) were used to collect data. Results for 90 patients were analyzed.
The mean (±SD) ZCBS score of the caregivers was 44.78 ± 13.55. Care burden of the caregivers according to the ZCBS was categorized as; 61.1% (n = 55) mild, 25.6% (n = 23) moderate, and 13.3% (n = 12) severe. Although single caregivers were perceived as having a relatively higher burden than those who were married (80% and 36%), this difference was not significant. There were no statistically significant differences between ZCBS categories concerning caregivers' gender, educational status, and having comorbidities (p > 0.05). Also, there were no significant correlations between ZCBS and the WHOQOL-BREF domains (p > 0.05).
This study showed that the quality of life of the caregivers of children with FMF was not adversely affected, but a significant number of caregivers perceived care burden in moderate severity. Attention should be paid to the needs of caregivers, and they should be provided with adequate social, economic, physical, and psychological support.
Responsive strategies to support caregivers' should be taken as means of social, economic, physical, and psychological needs.
本研究旨在确定照料者在照料纤维肌痛综合征（FMF）患儿时的负担和生活质量。
本研究为横断面研究。邀请了儿科肾脏病学部门随访的 109 名 FMF 患儿的照料者参加研究。除了人口统计学信息外，还使用了 Zarit 照料者负担量表（ZCBS）和世界卫生组织生活质量问卷-简表（WHOQOL-BREF）收集数据。分析了 90 名患者的结果。
照料者的平均（±SD）ZCBS 得分为 44.78±13.55。根据 ZCBS，照料者的负担程度分类为：61.1%（n=55）为轻度，25.6%（n=23）为中度，13.3%（n=12）为重度。尽管单身照料者被认为比已婚照料者（80%和 36%）的负担相对较高，但这种差异无统计学意义。在照料者的性别、教育程度和是否存在合并症方面，ZCBS 类别之间没有统计学差异（p>0.05）。此外，ZCBS 与 WHOQOL-BREF 各领域之间也没有显著相关性（p>0.05）。
本研究表明，FMF 患儿照料者的生活质量并未受到不利影响，但仍有相当数量的照料者认为自己处于中度严重程度的负担。应关注照料者的需求，并为他们提供足够的社会、经济、身体和心理支持。
应采取响应式策略来满足照料者的社会、经济、身体和心理需求。
