a Department of Primary and Community Care , Radboud University Medical Center , Nijmegen , The Netherlands.
b Department of Neurology and Parkinson Centre Nijmegen, Donders Institute for Brain, Cognition and Behaviour , Radboud University Medical Center , Nijmegen , The Netherlands.
Eur J Gen Pract. 2018 Dec;24(1):138-145. doi: 10.1080/13814788.2018.1447561.
Chronically ill patients have to cope with transfers in the level or setting of care. Patients with prevalent disorders such as diabetes mellitus can be supported by their general practitioner (GP) when experiencing such care changes, as the GP already offers them disease-specific care. For community-dwelling patients with low-prevalent diseases such as Parkinson's disease (PD) - for which disease-specific care is provided by medical specialists - tailoring support to handle care changes requires more insight into patients' coping.
To explore PD patients' coping with care changes.
A qualitative interview study was performed in 2013-2015 with a purposive sample of 16 community-dwelling PD patients in the Netherlands. A research assistant visited patients every month to explore if they had experienced a care change. If so, patients were interviewed face-to-face. An inductive approach to comparative content analysis was used.
Patients encountered a variety of care changes such as changes in the level of unpaid care, the purchase of tools, modification of pharmacotherapy or admission to hospital. Being able to anticipate, initiate and independently handle care changes contributes to patients' sense of control and acceptance of the post-change situation. Patients, who commenced care changes themselves, had more realistic expectations of it.
Community-dwelling PD patients seem to be able to cope with the care changes they face. Offering education to facilitate their anticipation and initiation of changes in care and their ability to act independently, can contribute to patients' wellbeing. GPs can play a role in this.
慢性病患者必须应对护理水平或护理环境的变化。患有糖尿病等常见疾病的患者在经历此类护理变化时，可以得到他们的全科医生（GP）的支持，因为 GP 已经为他们提供了特定疾病的护理。对于居住在社区的患有低流行疾病（如帕金森病（PD））的患者，由于特定疾病的护理由医学专家提供，因此需要更深入地了解患者的应对能力，以提供个性化的支持来处理护理变化。
探索 PD 患者应对护理变化的方式。
本研究于 2013 年至 2015 年采用目的抽样法，对荷兰的 16 名居住在社区的 PD 患者进行了定性访谈研究。一名研究助理每月拜访患者，以了解他们是否经历过护理变化。如果有，患者将进行面对面的访谈。采用归纳法对比较内容分析进行分析。
患者遇到了各种护理变化，如非付费护理水平的变化、工具的购买、药物治疗的调整或住院。能够预测、启动和独立处理护理变化有助于患者的控制感和对变化后情况的接受程度。自己启动护理变化的患者对其有更现实的期望。
居住在社区的 PD 患者似乎能够应对他们面临的护理变化。为促进患者对护理变化的预期、启动和独立行动能力提供教育，可以有助于提高患者的幸福感。全科医生可以在这方面发挥作用。
