Department of Medicine for Older People, Amsterdam UMC, Location Vrije Universiteit Amsterdam, de Boelelaan 1117, Amsterdam, The Netherlands.
Amsterdam Public Health, Aging and Later Life, Amsterdam, The Netherlands.
Eur Geriatr Med. 2022 Oct;13(5):1197-1210. doi: 10.1007/s41999-022-00647-z. Epub 2022 May 11.
Worldwide, an increasing number of people are diagnosed with atypical Parkinsonism or idiopathic Parkinson's disease (PD). Periods of acute functional decline, triggered by acute disease, are common. Rehabilitation is often necessary to restore functioning. Skilled nursing facilities (SNFs) in the Netherlands have developed evidence-based geriatric rehabilitation for Parkinson (GR-P) programs. However, data on the experiences and needs of patients and their caregivers are lacking. This study aims to address these, in order to propose recommendations for improvement.
We performed a qualitative study, using semi-structured interviews in two Dutch SNFs offering GR-P. Nine patients with PD and six informal caregivers were included. We subjected verbatim transcripts of 15 interviews to qualitative analysis.
Data saturation was reached after 15 interviews. Three overarching themes emerged: (1) autonomy, (2) sharing information and (3) contact with others. Loss of autonomy was linked to the underlying disease and the rehabilitation environment itself. Patients and caregivers felt overwhelmed by events before and during rehabilitation, expressing a need to receive information and discuss prior experiences. They considered communication between hospitals and SNFs to be poor. Patients did not always appreciate contact with peers. Both patients and caregivers appreciated empathic healthcare personnel with a firm knowledge on PD.
Autonomy, sharing information and contact with others are central themes for patients and caregivers during GR-P in SNFs. We recommend actively exploring these three central themes with every patient and caregiver entering a GR-P program and offering staff continuing education on PD, in order to improve care.
在全球范围内，越来越多的人被诊断为非典型帕金森病或特发性帕金森病（PD）。由急性疾病引发的急性功能下降期很常见。康复通常是恢复功能所必需的。荷兰的熟练护理设施（SNF）已经为帕金森病（GR-P）制定了循证老年康复计划。然而，缺乏关于患者及其护理人员的经验和需求的数据。本研究旨在解决这些问题，以便提出改进建议。
我们进行了一项定性研究，在两家提供 GR-P 的荷兰 SNF 中进行了半结构式访谈。纳入了 9 名 PD 患者和 6 名非正式护理人员。我们对 15 次访谈的逐字记录进行了定性分析。
在 15 次访谈后达到了数据饱和。出现了三个总体主题：（1）自主性，（2）信息共享和（3）与他人的联系。自主性的丧失与潜在疾病和康复环境本身有关。患者和护理人员在康复前和康复期间感到不知所措，表达了接收信息和讨论先前经验的需求。他们认为医院和 SNF 之间的沟通不佳。患者并不总是欣赏与同龄人接触。患者和护理人员都欣赏对 PD 有坚定了解且富有同情心的医疗保健人员。
自主性、信息共享和与他人的联系是患者和护理人员在 SNF 中进行 GR-P 的核心主题。我们建议在每个进入 GR-P 计划的患者和护理人员中积极探索这三个核心主题，并为员工提供 PD 继续教育，以改善护理。
