Caregivers' Knowledge and Timing of Palliative Care in Parkinson's Disease: A Survey Study.
5 affiliations
- 1Division of Palliative Care, Department of Family and Community Medicine, Baycrest Health Sciences Centre & University of Toronto, Toronto, Ontario, Canada.
- 2Social Work, Baycrest Health Sciences Centre, Toronto, Ontario, Canada.
- 3Kunin-Lunenfeld Centre for Applied Research and Evaluation, Rotman Research Institute, Baycrest Academy for Research and Education, Toronto, Ontario, Canada.
- 4Department of Psychiatry, Baycrest Health Sciences Centre, Toronto, Ontario, Canada.
- 5Movement Disorders and Spasticity Management Clinic, Pamela and Paul Austin Centre for Neurology and Behavioral Support, Baycrest Health Sciences Centre, Toronto, Ontario, Canada.
Abstract
Background
Palliative care is underused in Parkinson's disease (PD) and often initiated only in the final days of life. Caregivers shape health care decisions as cognitive impairment advances, yet how PD caregivers specifically compare in perceived versus actual knowledge and what they believe about the timing of initiation remain incompletely characterized.Objectives
The aim of the study was to compare perceived and actual palliative care knowledge among PD caregivers, characterize beliefs about optimal timing of initiation, and identify associated factors.Methods
A cross-sectional survey of informal caregivers was conducted at the Movement Disorders Clinic, Baycrest Health Sciences Centre, Toronto. Caregivers with health care training were excluded. Perceived knowledge was rated on a six-point scale; actual knowledge was assessed with true/false items benchmarked against the World Health Organization (WHO) palliative care definition. Sex differences were tested with Wilcoxon rank-sum and Fisher's exact tests (P < 0.05).Results
Fifty-two caregivers participated (mean age 54 years; 50% female; 84.6% adult children). Ninety-two percent rated their knowledge as good or excellent, yet 88.5% endorsed the belief that palliative care is primarily for dying patients, the only item a majority answered incorrectly. Accuracy on remaining items ranged from 75% to 100%. Among caregivers whose relative had received palliative care, 73.1% recalled initiation at Hoehn and Yahr stage 5, although 50% preferred earlier initiation. Agreement with early integration exceeded 82% across all 20 attitude items. No sex differences observed.Conclusions
PD caregivers combine high self-rated knowledge with a singular misconception equating palliative care with dying, alongside a preference for earlier integration. The pattern indicates a system-level referral gap rather than caregiver resistance and supports clinic-embedded education and proactive, stage-decoupled referral.
Related
- Unmet Needs of Patients With Parkinson’s Disease and Their Caregivers During the Discharge Transition: A Qualitative Descriptive Study
- Lipid Dysregulation and Impaired Resolution of Inflammation in Genetic Forms of Parkinson’s Disease: Potential Links and Knowledge Gaps
- Altered Timing of Self-Voice Processing in Parkinson's Disease.
- Family caregivers’ experience in providing home-based palliative care: A descriptive phenomenological study
- Needs among persons with advanced COPD and their informal caregivers: a multi-perspective qualitative study focusing on the potential role of palliative care.
BibTeX
@article{perri2026caregivers,
title = {{Caregivers' Knowledge and Timing of Palliative Care in Parkinson's Disease: A Survey Study.}},
author = {Giulia-Anna Perri and Leslie Shafran and Rosalind Sham and Alex Kiss and Galit Kleiner},
journal = {Movement disorders clinical practice},
year = {2026},
month = nov,
doi = {10.1002/mdc3.70868},
url = {https://europepmc.org/article/MED/42968413},
note = {CC BY-NC-ND},
}
RIS
TY - JOUR
TI - Caregivers' Knowledge and Timing of Palliative Care in Parkinson's Disease: A Survey Study.
AU - Giulia-Anna Perri
AU - Leslie Shafran
AU - Rosalind Sham
AU - Alex Kiss
AU - Galit Kleiner
PY - 2026
DA - 2026/11/01
JO - Movement disorders clinical practice
DO - 10.1002/mdc3.70868
UR - https://europepmc.org/article/MED/42968413
AB - Background Palliative care is underused in Parkinson's disease (PD) and often initiated only in the final days of life. Caregivers shape health care decisions as cognitive impairment advances, yet how PD caregivers specifically compare in perceived versus actual knowledge and what they believe about the timing of initiation remain incompletely characterized.Objectives The aim of the study was to compare perceived and actual palliative care knowledge among PD caregivers, characterize beliefs about optimal timing of initiation, and identify associated factors.Methods A cross-sectional survey of informal caregivers was conducted at the Movement Disorders Clinic, Baycrest Health Sciences Centre, Toronto. Caregivers with health care training were excluded. Perceived knowledge was rated on a six-point scale; actual knowledge was assessed with true/false items benchmarked against the World Health Organization (WHO) palliative care definition. Sex differences were tested with Wilcoxon rank-sum and Fisher's exact tests (P < 0.05).Results Fifty-two caregivers participated (mean age 54 years; 50% female; 84.6% adult children). Ninety-two percent rated their knowledge as good or excellent, yet 88.5% endorsed the belief that palliative care is primarily for dying patients, the only item a majority answered incorrectly. Accuracy on remaining items ranged from 75% to 100%. Among caregivers whose relative had received palliative care, 73.1% recalled initiation at Hoehn and Yahr stage 5, although 50% preferred earlier initiation. Agreement with early integration exceeded 82% across all 20 attitude items. No sex differences observed.Conclusions PD caregivers combine high self-rated knowledge with a singular misconception equating palliative care with dying, alongside a preference for earlier integration. The pattern indicates a system-level referral gap rather than caregiver resistance and supports clinic-embedded education and proactive, stage-decoupled referral.
SN - 2330-1619
ER -