可及性、污名与社区参与：农村及服务不足人群的实施策略

文献信息

中文摘要

背景： 帕金森病仍然是增长最快的神经退行性疾病之一。患者的最佳照护可能包括适当的药物分配和调整、物理治疗、言语和吞咽治疗，以及在某些情况下使用先进的设备辅助治疗。这些可能产生高昂费用并变得难以负担，尤其是在政府补贴可能有限的低社会经济国家。此外，获得照护可能困难且昂贵，尤其是在农村地区的人群中。另外，文化背景可能延迟就医行为，尤其是在亚洲，"面子"概念在社会中扮演着重要角色。在此，我们简要回顾亚洲照护可及性的现状、亚洲患者背景下的污名，以及社区参与如何帮助减少帕金森病患者的照护障碍。我们提供了多种参与社区的方式、其障碍以及如何克服这些障碍，并介绍了在印度和泰国开展的社区参与的两个真实案例，以减少照护差距、污名并提高公众对帕金森病的认识。

英文摘要

Parkinson's disease remains one of the fastest growing neurodegenerative disorder. Optimal care for the patients may include proper medication dispensation and adjustment, physiotherapy, speech and swallowing therapy, and in some cases advanced device-aided therapy. These may incur a high cost and rendered unaffordable, especially in lower socioeconomic countries where government subsidies maybe limited. Moreover, gaining access to care may be difficult and expensive, especially among those in rural areas. Additionally, cultural contexts may delay care-seeking, especially in Asia where the concept of "face" plays a prominent role in society. Here, we briefly review the current status of access to care in Asia, stigma in the context of Asian patients, and how community engagement can help reduce the barriers to care of people with Parkinson's. We provide various ways to engage the community, their barriers and how they could be overcome, and two real-life examples of community engagement done in India and Thailand to reduce the gap in care, stigma and increase public awareness of Parkinson's.