Research Centre for Health and Welfare Technology, Programme for Rehabilitation, VIA University College, Aarhus, Denmark.
Department of Occupational Therapy in Aarhus, VIA University College, Aarhus, Denmark.
Health Soc Care Community. 2022 Nov;30(6):e3507-e3518. doi: 10.1111/hsc.13970. Epub 2022 Aug 17.
People with Parkinson's disease (PD) may find it difficult to identify and access the wide number of services they need and are entitled to along their complex PD journey. As part of the project OPTIM-PARK - Optimisation of community resources and systems of support to enhance the process of living with Parkinson's Disease, document analysis was developed to create overviews of existing resources and systems of support in Denmark, Norway, Spain and the United Kingdom. Documents on community resources, policies, guidelines and professional recommendations were the main sources of information. They were sought systematically at official websites of the public sector (national and regional levels) and websites of non-governmental organisations and scientific societies; searches were performed in October 2020 and updated in September 2021. A higher-level cross-national content analysis integrated all the country-specific information. Data- and concept-driven coding frames were developed; trial coding and peer review strengthened face validity and reliability. The analysis led to overviews of: (1) Key aims at patient and societal levels. (2) Key elements in form of professional approaches. (3) Community resources. (4) Legally anchored services. In general, clear descriptions of how to implement care pathways and tools to facilitate delivery were missing in the included documents, and pathways and guidelines did not include referral to general social support, social security support or labour and employment support. The results shed light on the complex support systems and resources and can inspire the planning of more comprehensive care pathways for people with PD and other long-term conditions.
帕金森病患者(PD)可能会发现难以识别和获得他们在复杂的 PD 旅程中所需和应得的大量服务。作为 OPTIM-PARK 项目的一部分 - 优化社区资源和支持系统,以增强帕金森病患者的生活进程,对文件进行了分析,以创建丹麦、挪威、西班牙和英国现有资源和支持系统的概述。社区资源、政策、指南和专业建议方面的文件是主要信息来源。它们是从公共部门(国家和地区层面)的官方网站和非政府组织及科学协会的网站上系统地搜索的;搜索于 2020 年 10 月进行,并于 2021 年 9 月更新。跨国界的高层次内容分析整合了所有特定国家的信息。制定了数据和概念驱动的编码框架;试用编码和同行评审加强了表面有效性和可靠性。该分析导致了以下方面的概述:(1)在患者和社会层面的主要目标。(2)以专业方法为形式的主要内容。(3)社区资源。(4)依法锚定的服务。一般来说,所包括的文件中缺乏关于如何实施护理途径和工具以促进交付的明确说明,途径和指南也没有包括一般社会支持、社会保障支持或劳动和就业支持的转介。结果揭示了复杂的支持系统和资源,可以为 PD 和其他长期疾病患者规划更全面的护理途径提供启示。