帕金森病的照顾者负担:一项全国性的观察性调查。

IF 2.7 4区 医学 Q2 CLINICAL NEUROLOGY
Giulia Donzuso, Paolo Brunelli, Giangi Milesi, Silvia Mancini, Francesca Martillotti, Calogero Edoardo Cicero, Michele Tinazzi, Mario Zappia
{"title":"帕金森病的照顾者负担:一项全国性的观察性调查。","authors":"Giulia Donzuso, Paolo Brunelli, Giangi Milesi, Silvia Mancini, Francesca Martillotti, Calogero Edoardo Cicero, Michele Tinazzi, Mario Zappia","doi":"10.1007/s10072-025-08306-4","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>Caregivers play an important role in Parkinson's disease (PD), especially in the advanced stages. Aim of this study is to evaluate the caregiver burden of PD in an Italian sample of caregivers.</p><p><strong>Materials and methods: </strong>An online anonymous survey was conducted among Italian caregivers funded by \"Fondazione LIMPE per il Parkinson ONLUS\" and \"Confederazione Parkinson Italia\". The survey encompassed several dimensions (i.e. caregiving, work, economic and personal health) related to caregivers' activities and patients' characteristics.</p><p><strong>Results: </strong>The survey was completed by 478 caregivers, 361 were women (75%), and the majority had an age included between 55 and 70 years old (46.4%). The burden of assistance increased from 1 to 2 days weekly in the first period of the disease to all the weekly days with the progression of the disease. 15% of caregivers reported not working because of assistance, and among caregivers who were still working, almost 70% reported at least one working day lost monthly due to caregiving activities. Concerning health, most caregivers reported an impact on health due to the assistance, in terms of \"excessive tiredness\" (74.6%), and \"lack of sleep\" (60.5%) as the most impacting disturbances. Considering gender, women caregivers reported that they could not work due to the assistance and complained a higher impact on health than men caregivers.</p><p><strong>Conclusion: </strong>Caregivers of PD patients experienced and reported the presence of caregiver burden in several domains. Additionally, a gender-related pattern was present suggesting the need of a customized support to enhance awareness and minimizing caregiver burden.</p>","PeriodicalId":19191,"journal":{"name":"Neurological Sciences","volume":" ","pages":""},"PeriodicalIF":2.7000,"publicationDate":"2025-06-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Caregiver burden in Parkinson's disease: a nationwide observational survey.\",\"authors\":\"Giulia Donzuso, Paolo Brunelli, Giangi Milesi, Silvia Mancini, Francesca Martillotti, Calogero Edoardo Cicero, Michele Tinazzi, Mario Zappia\",\"doi\":\"10.1007/s10072-025-08306-4\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Background: </strong>Caregivers play an important role in Parkinson's disease (PD), especially in the advanced stages. Aim of this study is to evaluate the caregiver burden of PD in an Italian sample of caregivers.</p><p><strong>Materials and methods: </strong>An online anonymous survey was conducted among Italian caregivers funded by \\\"Fondazione LIMPE per il Parkinson ONLUS\\\" and \\\"Confederazione Parkinson Italia\\\". The survey encompassed several dimensions (i.e. caregiving, work, economic and personal health) related to caregivers' activities and patients' characteristics.</p><p><strong>Results: </strong>The survey was completed by 478 caregivers, 361 were women (75%), and the majority had an age included between 55 and 70 years old (46.4%). The burden of assistance increased from 1 to 2 days weekly in the first period of the disease to all the weekly days with the progression of the disease. 15% of caregivers reported not working because of assistance, and among caregivers who were still working, almost 70% reported at least one working day lost monthly due to caregiving activities. Concerning health, most caregivers reported an impact on health due to the assistance, in terms of \\\"excessive tiredness\\\" (74.6%), and \\\"lack of sleep\\\" (60.5%) as the most impacting disturbances. Considering gender, women caregivers reported that they could not work due to the assistance and complained a higher impact on health than men caregivers.</p><p><strong>Conclusion: </strong>Caregivers of PD patients experienced and reported the presence of caregiver burden in several domains. Additionally, a gender-related pattern was present suggesting the need of a customized support to enhance awareness and minimizing caregiver burden.</p>\",\"PeriodicalId\":19191,\"journal\":{\"name\":\"Neurological Sciences\",\"volume\":\" \",\"pages\":\"\"},\"PeriodicalIF\":2.7000,\"publicationDate\":\"2025-06-23\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Neurological Sciences\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1007/s10072-025-08306-4\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"CLINICAL NEUROLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Neurological Sciences","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1007/s10072-025-08306-4","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"CLINICAL NEUROLOGY","Score":null,"Total":0}
引用次数: 0

摘要

背景:护理人员在帕金森病(PD)中起着重要的作用,特别是在晚期。本研究的目的是评估意大利护理人员样本中PD的护理人员负担。材料和方法:在“Fondazione LIMPE per il Parkinson ONLUS”和“Confederazione Parkinson Italia”资助的意大利护理人员中进行在线匿名调查。调查包括与照顾者的活动和病人的特点有关的几个方面(即照顾、工作、经济和个人健康)。结果:共有478名护理人员完成调查,其中女性361人(75%),年龄在55 - 70岁之间的占46.4%。随着病情的发展,辅助负担从发病初期的每周1 ~ 2天增加到每周全部天数。15%的护理人员报告说,由于需要帮助而不工作,而在仍在工作的护理人员中,近70%的人报告说,由于护理活动,每月至少损失一个工作日。在健康方面,大多数护理人员报告说,由于提供帮助,他们的健康受到了影响,其中影响最大的是“过度疲劳”(74.6%)和“睡眠不足”(60.5%)。考虑到性别因素,女性照顾者报告说,她们由于受到帮助而无法工作,并抱怨对健康的影响比男性照顾者更大。结论:PD患者的照顾者在几个领域经历并报告了照顾者负担的存在。此外,存在与性别相关的模式,表明需要定制支持,以提高认识并尽量减少照顾者的负担。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Caregiver burden in Parkinson's disease: a nationwide observational survey.

Background: Caregivers play an important role in Parkinson's disease (PD), especially in the advanced stages. Aim of this study is to evaluate the caregiver burden of PD in an Italian sample of caregivers.

Materials and methods: An online anonymous survey was conducted among Italian caregivers funded by "Fondazione LIMPE per il Parkinson ONLUS" and "Confederazione Parkinson Italia". The survey encompassed several dimensions (i.e. caregiving, work, economic and personal health) related to caregivers' activities and patients' characteristics.

Results: The survey was completed by 478 caregivers, 361 were women (75%), and the majority had an age included between 55 and 70 years old (46.4%). The burden of assistance increased from 1 to 2 days weekly in the first period of the disease to all the weekly days with the progression of the disease. 15% of caregivers reported not working because of assistance, and among caregivers who were still working, almost 70% reported at least one working day lost monthly due to caregiving activities. Concerning health, most caregivers reported an impact on health due to the assistance, in terms of "excessive tiredness" (74.6%), and "lack of sleep" (60.5%) as the most impacting disturbances. Considering gender, women caregivers reported that they could not work due to the assistance and complained a higher impact on health than men caregivers.

Conclusion: Caregivers of PD patients experienced and reported the presence of caregiver burden in several domains. Additionally, a gender-related pattern was present suggesting the need of a customized support to enhance awareness and minimizing caregiver burden.

求助全文
通过发布文献求助,成功后即可免费获取论文全文。 去求助
来源期刊
Neurological Sciences
Neurological Sciences 医学-临床神经学
CiteScore
6.10
自引率
3.00%
发文量
743
审稿时长
4 months
期刊介绍: Neurological Sciences is intended to provide a medium for the communication of results and ideas in the field of neuroscience. The journal welcomes contributions in both the basic and clinical aspects of the neurosciences. The official language of the journal is English. Reports are published in the form of original articles, short communications, editorials, reviews and letters to the editor. Original articles present the results of experimental or clinical studies in the neurosciences, while short communications are succinct reports permitting the rapid publication of novel results. Original contributions may be submitted for the special sections History of Neurology, Health Care and Neurological Digressions - a forum for cultural topics related to the neurosciences. The journal also publishes correspondence book reviews, meeting reports and announcements.
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
确定
请完成安全验证×
copy
已复制链接
快去分享给好友吧!
我知道了
右上角分享
点击右上角分享
0
联系我们:info@booksci.cn Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。 Copyright © 2023 布克学术 All rights reserved.
京ICP备2023020795号-1
ghs 京公网安备 11010802042870号
Book学术文献互助
Book学术文献互助群
群 号:604180095
Book学术官方微信