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探讨照顾患有神经源性直立性低血压个体的影响:一项定性研究。

Exploring the impact of caring for an individual with neurogenic orthostatic hypotension: a qualitative study.

机构信息

Acaster Lloyd Consulting Ltd, London, WC1X 8NL, UK.

HEOR and Value Strategy, Theravance Biopharma US, Inc., San Francisco, CA 94080, USA.

出版信息

Neurodegener Dis Manag. 2023 Jun;13(3):191-201. doi: 10.2217/nmt-2022-0016. Epub 2023 Jun 14.

Abstract

This study aimed to explore the impact of caring for an individual with neurogenic orthostatic hypotension (nOH). Informal caregivers of individuals with nOH and either Parkinson's disease, multiple system atrophy, pure autonomic failure or dementia with Lewy bodies completed semi-structured interviews. Data were analyzed using thematic analysis; the identified concepts were used to develop a conceptual model. Twenty informal caregivers were interviewed. Analysis identified several areas of caregiver impact due to nOH including impact on their time, particularly a need to supervise the patient to prevent falls as well as a lack of freedom and negative physical, work and social impacts. Many reported negative emotional impacts, including worry, stress or fear about the patient falling, depression and frustration. The conceptual model shows the relationships between concepts. The results highlight the wide-ranging impact of nOH, and the specific impact of the fear of falls on informal caregivers' lives.

摘要

本研究旨在探讨照顾患有神经源性直立性低血压(nOH)患者的影响。患有 nOH 的帕金森病、多系统萎缩、单纯自主神经衰竭或路易体痴呆患者的非专业照护者完成了半结构化访谈。使用主题分析对数据进行分析;所确定的概念被用于开发一个概念模型。对 20 名非专业照护者进行了访谈。分析确定了由于 nOH 对照护者产生的几个影响领域,包括对他们时间的影响,特别是需要监督患者以防止跌倒,以及缺乏自由和对身体、工作和社会的负面影响。许多人报告了负面的情绪影响,包括对患者跌倒的担忧、压力或恐惧、抑郁和沮丧。概念模型显示了概念之间的关系。研究结果强调了 nOH 的广泛影响,以及对跌倒恐惧对非专业照护者生活的具体影响。

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