Perceptions of Neurologists and Other Healthcare Professionals Regarding Palliative Care for Parkinson Disease: A Qualitative Study
Umer Akbar1, Sandhya Seshadri2, Megan Dini3, Nicole Lessard4, Benzi Kluger2
1Hackensack Meridian School of Medicine, 2University of Rochester, 3The Parkinson's Foundation, 4Parkinson’s Foundation
Objective:
Post-implementation assessment of healthcare professionals’ (HCP) perceptions of (a) palliative care (PC) for persons with Parkinson’s disease (PWP), (b) the implementation process, and (c) needs for sustainment.
Background:
We designed and implemented a national project on team-based PC for PWP at the Parkinson’s Foundation US Centers of Excellence.
Design/Methods:
We used a qualitative descriptive research design. Between April and July 2023, we conducted semi-structured interviews and a focus group with HCP (n=19, including 8 neurologists). Data were collected until there was evidence of saturation. Interviews were audio-recorded, transcribed, coded, and analyzed.
Results:
Study participants (15 female) included physicians, nurses, and social workers. Five themes were identified: 1) Palliative care is the net that catches you when you need it. Participants felt that a PC approach helped them be proactive in managing PWP; 2) The palliative care pillars provided structure that facilitated the development of systems. Having an operational definition of PC for PWP eased misconceptions of PC being only for end of life and provided a framework for timely conversations; 3) Patients’ emotional and spiritual needs, care-partner support, and future planning take time to establish. Systemic barriers and lack of time impede necessary discussions; 4) Building connections with palliative care and hospice specialists strengthened timely referrals. Despite discomfort with hospice discussions, establishing connections with institutional and community PC specialists and hospice facilitated referrals; and 5) Palliative care champions need leadership support, ongoing education, and resources for long-term sustainability. For long term sustainment, PC champions want leadership buy-in and continued PC education.
Conclusions:
HCPs see the value of a PC approach to PD care. Long term sustainment requires leadership and system support, access to resources as well as ongoing education for PC champions.
Disclaimer: Abstracts were not reviewed by Neurology® and do not reflect the views of Neurology® editors or staff.