探索帕金森病患者及其亲属的生活体验：了解德国的照护提供经验、疾病管理支持、自我管理策略以及未来需求（定性研究）。
Exploring the lived experiences of individuals with Parkinson's disease and their relatives: insights into care provision experiences, disease management support, self-management strategies, and future needs in Germany (qualitative study).
机构信息
Medical Psychology | Neuropsychology and Gender Studies, Centre for Neuropsychological Diagnostics and Intervention (CeNDI), Faculty of Medicine, University Hospital Cologne, University of Cologne, Cologne, Germany.
Movement Disorder Clinic, Kliniken Beelitz, Beelitz-Heilstätten, Germany.
出版信息
BMC Neurol. 2024 Jun 18;24(1):208. doi: 10.1186/s12883-024-03696-y.
BACKGROUND
Parkinson's disease (PD) significantly impacts the health-related quality of life of affected individuals and their relatives. In order to support the affected individuals and their families in coping with PD, it is essential to offer comprehensive information about their experiences. A comprehensive understanding of their lived experiences with the disease, the healthcare system, applied self-management strategies and their needs is considered crucial for developing a PD support program. Therefore, we aimed to explore the lived experiences and support needs of individuals with PD and their relatives in Germany.
METHODS
This non-interventional, qualitative study conducted an explorative status quo and needs assessment. It generated knowledge through semi-structured focus groups and interviews with individuals with PD at various disease stages and their relatives. The interviews were digitally recorded, transcribed verbatim, and analysed using content analysis.
RESULTS
Fifty-two individuals with PD and 29 relatives participated in eight focus groups and 13 paired and 13 individual interviews. Four themes with corresponding subthemes emerged: (1) experiences, revealing individuals' experiences around their diagnosis and with disease-specific care provision; (2) management support offers, clarifying who provides support and the type of support offered; (3) self-management, including comprehensibility, meaningfulness and manageability; and (4) future needs, differentiating between deficits and needs. Most participants expressed a sense of abandonment when obtaining self-management strategies and mastering their lives with PD, often referred to as 'life 2.0'. They identified the lack of structured and adequate provision of information, system orientation and social awareness.
CONCLUSIONS
In Germany, there is an urgent need for a comprehensive PD care program that addresses the needs of individuals with PD and their relatives from the start of their care trajectory. It could assist individuals in gaining a comprehensive understanding of the disease, obtaining self-management strategies, building a support network, and becoming experts in self-managing their disease. Moreover, it may positively influence their care trajectory and reduce burdens, such as overburdening, fear of progression, and health anxiety.
TRIAL REGISTRATION
German Clinical Studies Register ( https://www.drks.de/DRKS00030090 , No. DRKS00030090, Date of registration: 15.12.2022).
背景
帕金森病（PD）显著影响患者及其家属的健康相关生活质量。为了支持患者及其家庭应对 PD，提供全面的相关信息至关重要。全面了解他们的疾病经历、医疗保健系统、应用的自我管理策略以及他们的需求，对于制定 PD 支持计划至关重要。因此，我们旨在探索德国 PD 患者及其家属的生活体验和支持需求。
方法
这是一项非干预性、定性研究，进行了探索性现状和需求评估。通过对处于不同疾病阶段的 PD 患者及其亲属进行半结构式焦点小组和访谈，生成知识。访谈以数字方式记录、逐字转录，并使用内容分析进行分析。
结果
52 名 PD 患者和 29 名亲属参加了 8 个焦点小组以及 13 对和 13 个单独的访谈。出现了四个主题，分别有相应的子主题：（1）体验，揭示了个体在诊断和特定疾病护理方面的经历；（2）管理支持提供，阐明了谁提供支持以及提供的支持类型；（3）自我管理，包括可理解性、有意义性和可管理性；（4）未来需求，区分了缺陷和需求。大多数参与者在获得自我管理策略和掌握 PD 生活时，都有一种被抛弃的感觉，通常被称为“生活 2.0”。他们发现缺乏结构化和充分的信息提供、系统导向和社会意识。
结论
在德国，迫切需要一个全面的 PD 护理计划，从患者及其亲属的护理轨迹开始，满足他们的需求。它可以帮助个体全面了解疾病，获得自我管理策略，建立支持网络，并成为自我管理疾病的专家。此外，这可能会对他们的护理轨迹产生积极影响，减轻负担，例如过度负担、对进展的恐惧和健康焦虑。
试验注册
德国临床研究注册处（https://www.drks.de/DRKS00030090，DRKS00030090，注册日期：2022 年 12 月 15 日）。
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