Palliative care for persons with Parkinson’s disease: a qualitative study on the experiences of health care professionals
Abstract Background Parkinson’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 t...
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| Format: | Article |
| Language: | English |
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BMC
2019-07-01
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| Series: | BMC Palliative Care |
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| Online Access: | http://link.springer.com/article/10.1186/s12904-019-0441-6 |
| _version_ | 1818314208576536576 |
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| author | Herma Lennaerts Maxime Steppe Marten Munneke Marjan J. Meinders Jenny T. van der Steen Marieke Van den Brand Dorian van Amelsvoort Kris Vissers Bastiaan R. Bloem Marieke Groot |
| author_facet | Herma Lennaerts Maxime Steppe Marten Munneke Marjan J. Meinders Jenny T. van der Steen Marieke Van den Brand Dorian van Amelsvoort Kris Vissers Bastiaan R. Bloem Marieke Groot |
| author_sort | Herma Lennaerts |
| collection | DOAJ |
| description | Abstract Background Parkinson’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. Methods This 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. Results Health 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. Conclusions Health 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. |
| first_indexed | 2024-12-13T08:45:59Z |
| format | Article |
| id | doaj.art-da7cf0097cd146fdb1b4381c95fa9f47 |
| institution | Directory Open Access Journal |
| issn | 1472-684X |
| language | English |
| last_indexed | 2024-12-13T08:45:59Z |
| publishDate | 2019-07-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Palliative Care |
| spelling | doaj.art-da7cf0097cd146fdb1b4381c95fa9f472022-12-21T23:53:26ZengBMCBMC Palliative Care1472-684X2019-07-011811910.1186/s12904-019-0441-6Palliative care for persons with Parkinson’s disease: a qualitative study on the experiences of health care professionalsHerma Lennaerts0Maxime Steppe1Marten Munneke2Marjan J. Meinders3Jenny T. van der Steen4Marieke Van den Brand5Dorian van Amelsvoort6Kris Vissers7Bastiaan R. Bloem8Marieke Groot9Department of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud university medical centerDepartment of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud university medical centerDepartment of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud university medical centerScientific Center for Quality of Healthcare, Radboud Institute for Health Sciences, Radboud university medical centerDepartment of Primary and Community Care, Radboud university medical centerDepartment of Anesthesiology, Pain and Palliative Medicine, Radboud university medical centerDutch Parkinson’s Disease AssociationDepartment of Anesthesiology, Pain and Palliative Medicine, Radboud university medical centerDepartment of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud university medical centerDepartment of Anesthesiology, Pain and Palliative Medicine, Radboud university medical centerAbstract Background Parkinson’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. Methods This 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. Results Health 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. Conclusions Health 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.http://link.springer.com/article/10.1186/s12904-019-0441-6Parkinson’s diseasePalliative careBarriersFacilitatorsFocus groupsQualitative approaches |
| spellingShingle | Herma Lennaerts Maxime Steppe Marten Munneke Marjan J. Meinders Jenny T. van der Steen Marieke Van den Brand Dorian van Amelsvoort Kris Vissers Bastiaan R. Bloem Marieke Groot Palliative care for persons with Parkinson’s disease: a qualitative study on the experiences of health care professionals BMC Palliative Care Parkinson’s disease Palliative care Barriers Facilitators Focus groups Qualitative approaches |
| title | Palliative care for persons with Parkinson’s disease: a qualitative study on the experiences of health care professionals |
| title_full | Palliative care for persons with Parkinson’s disease: a qualitative study on the experiences of health care professionals |
| title_fullStr | Palliative care for persons with Parkinson’s disease: a qualitative study on the experiences of health care professionals |
| title_full_unstemmed | Palliative care for persons with Parkinson’s disease: a qualitative study on the experiences of health care professionals |
| title_short | Palliative care for persons with Parkinson’s disease: a qualitative study on the experiences of health care professionals |
| title_sort | palliative care for persons with parkinson s disease a qualitative study on the experiences of health care professionals |
| topic | Parkinson’s disease Palliative care Barriers Facilitators Focus groups Qualitative approaches |
| url | http://link.springer.com/article/10.1186/s12904-019-0441-6 |
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