Suppr超能文献

进退维谷:帕金森病家庭护理者在大流行期间面临的挑战。

Between a Rock and a Hard Place: The Challenges of Caregiving During a Pandemic for Parkinson's Family Care Partners.

机构信息

Department of Neurology, University of Rochester, Rochester, NY, USA.

University of Rochester School of Nursing, Rochester NY, USA.

出版信息

Am J Hosp Palliat Care. 2023 Jul;40(7):784-792. doi: 10.1177/10499091221119462. Epub 2022 Aug 9.

Abstract

: To understand Parkinson's Disease (PD) care partners' a) challenges that led to worsening strain and b) their suggestions for supports to help them during the ongoing pandemic. : Using a qualitative descriptive design, semi-structured interviews with family care partners (n 19) were completed. Participants were recruited from 10 sites across the United States that varied in size, demographics of patient population served, and geographic location (urban, suburban, rural). Interviews were audio-recorded, de-identified, transcribed verbatim, and coded in a phased manner. The research team analyzed the data and identified themes. : During the pandemic, the already difficult task of caregiving was made worse by having to choose between poor options. Five themes exemplified PD care partner experiences: (1) Managing risks and benefits of medical care in settings outside the home vs meeting these needs at home; (2) Struggling to maintain employment benefits with the costs of care and risks of bringing in outside caregivers; (3) Struggling to balance caregiving and self-care; (4) Struggling to be supportive and taking on new caregiving roles in the face of less support services; and (5) Wanting social connections and feeling pressured to maintain isolation. Care partners wanted timely access to, and guidance from healthcare teams to help them. : Care partner burden was worsened by lack of guidance when confronted by choices that could lead to negative outcomes. Movement disorder and palliative care providers may be able to alleviate some care partner burden through building systems for timely access and guidance.

摘要

了解帕金森病(PD)护理伙伴的:a)导致压力恶化的挑战,以及 b)他们在持续大流行期间提供支持的建议。采用定性描述性设计,对 19 名家庭护理伙伴进行了半结构化访谈。参与者是从美国各地的 10 个地点招募的,这些地点在患者人群的规模、人口统计学特征和地理位置(城市、郊区、农村)上有所不同。采访是通过录音、匿名、逐字转录和分阶段编码进行的。研究团队分析了数据并确定了主题。在大流行期间,由于必须在家庭之外的医疗保健和在家中满足这些需求之间做出选择,本来就困难的护理工作变得更加困难。五个主题体现了 PD 护理伙伴的经历:(1)在家庭之外的环境中管理医疗保健的风险和益处与在家中满足这些需求之间的平衡;(2)努力在护理成本和引入外部护理人员的风险与维持就业福利之间取得平衡;(3)努力在护理和自我护理之间取得平衡;(4)在支持服务减少的情况下,努力保持支持并承担新的护理角色;(5)渴望社交联系并感到有压力保持隔离。护理伙伴希望能够及时获得医疗团队的支持和指导。由于面临可能导致负面后果的选择时缺乏指导,护理伙伴的负担加重了。运动障碍和姑息治疗提供者可以通过建立及时获得支持和指导的系统来减轻一些护理伙伴的负担。

相似文献

2
Parkinson's Disease Carepartners' Perceptions of the Challenges and Rewards of Caregiving.帕金森病患者照料者对照料挑战与回报的认知
Am J Hosp Palliat Care. 2024 Dec;41(12):1442-1450. doi: 10.1177/10499091231223739. Epub 2024 Jan 24.

本文引用的文献

10
Development and protocol for a nurse-led telephonic palliative care program.由护士主导的电话姑息治疗项目的开发与方案
Nurs Outlook. 2021 Jul-Aug;69(4):626-631. doi: 10.1016/j.outlook.2020.12.011. Epub 2021 Jan 21.

文献检索

告别复杂PubMed语法,用中文像聊天一样搜索,搜遍4000万医学文献。AI智能推荐,让科研检索更轻松。

立即免费搜索

文件翻译

保留排版,准确专业,支持PDF/Word/PPT等文件格式,支持 12+语言互译。

免费翻译文档

深度研究

AI帮你快速写综述,25分钟生成高质量综述,智能提取关键信息,辅助科研写作。

立即免费体验