Tennigkeit Jenny, Feige Tim, Haak Maria, Hellqvist Carina, Seven Ümran S, Kalbe Elke, Schwarz Jaqueline, Warnecke Tobias, Tönges Lars, Eggers Carsten, Loewenbrück Kai F
Department of Neurology, University Hospital Dresden, 01307 Dresden, Germany.
German Center for Neurodegenerative Diseases (DZNE) Dresden, 01307 Dresden, Germany.
J Clin Med. 2020 Aug 28;9(9):2787. doi: 10.3390/jcm9092787.
Integrated care is regarded as a key for care delivery to persons with chronic long-term conditions such as Parkinson's disease. For persons with Parkinson's disease, obtaining self-management support is a top priority in the context of integrated care. Self-management is regarded as a crucial competence in chronic diseases since the affected persons and their caregivers inevitably take up the main responsibility when it comes to day-to-day management. Formal self-management education programs with the focus on behavioral skills relevant to the induction and maintenance of behavioral change have been implemented as a standard in many chronic long-term conditions. However, besides the example of the Swedish National Parkinson School, the offers for persons with Parkinson's disease remain fragmented and limited in availability. Today, no such program is implemented as a nationwide standard in Germany. This paper provides (1) a systematic review on structured self-management education programs specifically designed or adopted for persons with Parkinson's disease, (2) presents the Swedish National Parkinson School as an example for a successfully implemented nationwide program and (3) presents a concept for the design, evaluation and long-term implementation of a future-orientated self-management education program for persons with Parkinson's disease in Germany.
综合护理被视为为患有帕金森病等慢性长期疾病的患者提供护理的关键。对于帕金森病患者而言，在综合护理背景下获得自我管理支持是首要任务。自我管理被视为慢性病的一项关键能力，因为在日常管理方面，患者及其护理人员不可避免地承担主要责任。许多慢性长期疾病都已将重点放在与行为改变的诱导和维持相关的行为技能上的正式自我管理教育项目作为标准实施。然而，除了瑞典国家帕金森学校的例子外，针对帕金森病患者的服务仍然零散且可获得性有限。如今，德国尚未将此类项目作为全国性标准实施。本文提供了（1）对专门为帕金森病患者设计或采用的结构化自我管理教育项目的系统综述，（2）以瑞典国家帕金森学校为例介绍一个成功实施的全国性项目，以及（3）提出一个针对德国帕金森病患者的面向未来的自我管理教育项目的设计、评估和长期实施的概念。
