Abstract
BackgroundParkinson’s disease (PD) is a chronic and neurodegenerative disease associated with a wide variety of symptoms. The risk of complications increases with progression of the disease. These complications have a tremendous impact on the quality of life of people with PD. The aim of this study was to examine health care professionals’ experiences of potential barriers and facilitators in providing palliative care for people with PD in the Netherlands.MethodsThis was a qualitative descriptive study. The data were collected from 10 individual in-depth interviews and three focus groups (n = 29) with health care professionals. Health care professionals were selected based on a positive answer to the question: “In the past 2 years, did you treat or support a person with PD who subsequently died?” The data were analyzed by thematic text analysis.ResultsHealth care professionals supported the development of a palliative care system for PD but needed to better understand the essence of palliative care. In daily practice, they struggled to identify persons’ needs due to interfering PD-specific symptoms such as cognitive decline and communication deficits. Timely addressing the personal preferences for providing palliative care was identified as an important facilitator. Health care professionals acknowledged being aware of their lack of knowledge and of their little competence in managing complex PD. Findings indicate a perceived lack of care continuity, fragmentation of services, time pressure and information discontinuity.ConclusionsHealth care professionals experienced several facilitators and barriers to the provision of palliative care to people with PD. There is a need to improve the knowledge on complex PD and the continuity of information, as well as optimize coordination and deliver care based on a persons’ preferences. Additional training can help to become more knowledgeable and confident.
Highlights
Parkinson’s disease (PD) is a chronic and neurodegenerative disease associated with a wide variety of symptoms
The analysis resulted in four themes and 13 subthemes relating to perceived barriers and facilitators for palliative care for persons with PD and their families
The themes are described in detail below with supporting data that are presented in Table 4 “Quotes taken from the interview and focus group discussions”
Summary
Parkinson’s disease (PD) is a chronic and neurodegenerative disease associated with a wide variety of symptoms. Many healthcare professionals from a wide range of professional disciplines can provide “generalist palliative care”. The need to further develop and implement specialised palliative care for persons with PD has received more attention over the last decades [11,12,13]. Despite these efforts, it is often not a common component of current PD care programs. It is unclear how “generalist palliative care” in PD should be provided. It is important to initiate palliative care at the appropriate disease stage, preferably in addition to a more disease-oriented approach [12,13,14]
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a callDisclaimer: All third-party content on this website/platform is and will remain the property of their respective owners and is provided on "as is" basis without any warranties, express or implied. Use of third-party content does not indicate any affiliation, sponsorship with or endorsement by them. Any references to third-party content is to identify the corresponding services and shall be considered fair use under The CopyrightLaw.
