Pedrosa Anna J, van Munster Marlena, Timmermann Lars, Pedrosa David J
Department of Neurology, University Hospital Giessen and Marburg, Marburg, Germany.
Department of International Health, CAPHRI Care and Public Health Research Institute, Maastricht University, Maastricht, Netherlands.
Front Aging Neurosci. 2023 Sep 6;15:1200143. doi: 10.3389/fnagi.2023.1200143. eCollection 2023.
A fundamental cornerstone of quality of healthcare is patient safety, which many people with life-limiting illnesses feel is being compromised. Perceptions of impaired safety are associated with the occurrence of psychological distress and healthcare utilization. However, little is known about how people with idiopathic Parkinson's disease (iPD) perceive their own safety toward the end of life. The aim of our study was therefore to investigate factors that influence the perception of safety of patients with advanced iPD.
We conducted semi-structured interviews with a purposeful sample of 21 patients with advanced iPD. Participants were recruited at the neurology department of a tertiary care hospital in Germany between August 2021 and June 2022. Data were analyzed using reflexive thematic analysis.
iPD-patients reported relevant impairment of their safety. While most participants expressed safety concerns based on the manifestation of disease, our analysis identified enablers and barriers to establishing safety in patients with advanced iPD, in 10 additional domains: relationship to the disease, informedness, self-perception, utilization of support and care structures, healthcare professionals and structures, treatment, social interaction, social security, spirituality, and environment.
This study provides new insights into safety perceptions of patients with advanced iPD, which extend well beyond the physical realm. The findings suggest that clinicians and policy makers should consider a holistic and multidisciplinary approach to assessing and improving patients' safety taking into account the enablers and barriers identified in this study.
医疗质量的一个基本基石是患者安全，许多患有危及生命疾病的人认为这一点正受到损害。对安全受损的认知与心理困扰的发生以及医疗服务利用有关。然而，对于特发性帕金森病（iPD）患者在生命末期如何看待自身安全，我们知之甚少。因此，我们研究的目的是调查影响晚期iPD患者安全认知的因素。
我们对21名晚期iPD患者进行了有目的抽样的半结构化访谈。参与者于2021年8月至2022年6月期间在德国一家三级护理医院的神经科招募。使用反思性主题分析法对数据进行分析。
iPD患者报告了其安全受到的相关损害。虽然大多数参与者基于疾病表现表达了安全担忧，但我们的分析确定了晚期iPD患者在另外10个领域建立安全的促进因素和障碍：与疾病的关系、信息了解情况、自我认知、支持和护理结构的利用、医疗专业人员和结构、治疗、社交互动、社会保障、精神层面和环境。
本研究为晚期iPD患者的安全认知提供了新的见解，这些见解远远超出了身体领域。研究结果表明，临床医生和政策制定者应考虑采用整体和多学科方法来评估和改善患者安全，同时考虑本研究中确定的促进因素和障碍。
