Palliative Care for Persons with Parkinson's Disease: a Qualitative Study on the Experiences of Health Care Professionals

Overview

Journal BMC Palliat Care

Publisher Biomed Central

Specialty Critical Care

Date 2019 Jul 11

PMID 31288821

Citations 15

Authors

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

Affiliations

Soon will be listed here.

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.

Citing Articles

The palliative care needs and experiences of patients with advanced Parkinson's disease: a qualitative scoping review.

Lou Y, Li Y, Chen Y Front Med (Lausanne). 2024; 11:1362828.

PMID: 38660425 PMC: 11039912. DOI: 10.3389/fmed.2024.1362828.

Current Status of Integrated Palliative Care Among Parkinson Foundation Centers of Excellence in the United States.

Akbar U, Seshadri S, Dini M, Auinger P, Norton S, Holtrop J Neurol Clin Pract. 2024; 14(2):e200278.

PMID: 38455124 PMC: 10915817. DOI: 10.1212/CPJ.0000000000200278.

A systematic practice review: Providing palliative care for people with Parkinson's disease and their caregivers.

Garon M, Weck C, Rosqvist K, Odin P, Schrag A, Krikmann U Palliat Med. 2023; 38(1):57-68.

PMID: 38054428 PMC: 10798024. DOI: 10.1177/02692163231214408.

Spiritual Care Perspectives of Elderly Individuals with Parkinson's Disease and Formal Caregivers: A Qualitative Study in Turkish Nursing Homes.

Kurtgoz A, Genc M J Relig Health. 2023; 63(3):2106-2124.

PMID: 38042960 DOI: 10.1007/s10943-023-01963-9.

The Effect of Spiritual Orientations and Religious Attitudes on Coping with the Difficulties Encountered by Family Caregivers of People with Parkinson's Disease in Türkiye.

Senturk S, Can S, Cicek S J Relig Health. 2023; 62(6):4278-4296.

PMID: 37964054 DOI: 10.1007/s10943-023-01941-1.

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