Parkinson disease patients' and carepartners' perceptions of palliative care.

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Sandhya Seshadri, Megan Dini, Jennifer Corcoran, Anna Job, Angela Contento, Sally A Norton, Jodi Summers Holtrop, Benzi M Kluger

Author Information

Sandhya Seshadri: Department of Neurology, University of Rochester, Rochester, NY, USA. Electronic address: Sandhya_seshadri@urmc.rochester.edu.
Megan Dini: Parkinson's Foundation, New York, NY, USA.
Jennifer Corcoran: Department of Neurology, University of Rochester, Rochester, NY, USA.
Anna Job: University of Rochester, Rochester, NY, USA.
Angela Contento: University of Rochester, Rochester, NY, USA.
Sally A Norton: University of Rochester School of Nursing, Rochester, NY, USA.
Jodi Summers Holtrop: Department of Family Medicine at the University of Colorado School of Medicine, Anschutz Medical Campus, CO, USA.
Benzi M Kluger: Department of Neurology, University of Rochester, Rochester, NY, USA.

PMID: 38160602 DOI: 10.1016/j.parkreldis.2023.105982

INTRODUCTION: Outpatient palliative care offers an opportunity to improve the quality of life of Parkinson's disease (PD) patients and families. While there are efforts to improve clinicians' palliative care knowledge and skills, there is limited knowledge on patients and carepartners' knowledge and perceptions of palliative care. As part of a larger study on implementing outpatient palliative care, this study aimed to understand patients' and carepartners' knowledge and perceptions of palliative care, and their palliative care needs and preferences prior to the implementation.
METHODS: Using qualitative descriptive research design, we completed semi-structured interviews with 47 patients and carepartners prior to the project implementation. De-identified transcripts of interviews were coded and analyzed.
RESULTS: Five themes were identified that describe patients' and carepartners' palliative care knowledge, perceptions, needs and preferences: (a) Patients and carepartners have varied knowledge and perceptions of palliative care (b) Non-motor symptoms are challenging for patients and carepartners, (c) Addressing patients' grief and emotional needs is important to patients and carepartners, (d) Carepartners want a place for emotional care, well-being, and strategizing and (e) Patients and carepartners desire anticipatory guidance and care planning. Study participants desired guidance to manage non-motor symptoms, support for patients' emotional needs and for carepartners, and for anticipatory guidance to guide future planning.
CONCLUSIONS: Despite varied palliative care knowledge, PD patients and carepartners universally desire care that addresses their palliative care needs. Palliative care education and integration of palliative care approaches into standard care may facilitate increased acceptance of outpatient palliative care throughout the disease trajectory.

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K02 AG062745/NIA NIH HHS
T32 NS007338/NINDS NIH HHS

Humans

Palliative Care

Parkinson Disease

Quality of Life

Qualitative Research

Patients

Journal Article

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