Exploring health and social services in Denmark, Norway, Spain and the United Kingdom for the development of Parkinson's care pathways. A document analysis

Abstract

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.

Keywords: Parkinson's disease; care pathways; chronic disease management; delivery of healthcare; health service research; social welfare.