Sneha Mantri1, Emily Klawson2, Steven Albert2, Robyn Rapoport3, Chelle Precht3, Sarah Glancey3, Margaret Daeschler4, Eugenia Mamikonyan5, Catherine M Kopil4, Connie Marras6, Lana M Chahine7. 1. Department of Neurology, Duke University, Durham, NC, United States of America. 2. Department of Behavioral and Community Health Sciences, University of Pittsburgh, Pittsburgh, PA, United States of America. 3. SSRS, Glen Mills, PA, United States of America. 4. The Michael J. Fox Foundation for Parkinson's Research, New York, NY, United States of America. 5. Department of Psychiatry, University of Pennsylvania, Philadelphia, PA, United States of America. 6. The Edmond J Safra Program in Parkinson's Disease, Toronto Western Hospital, University of Toronto, Toronto, Ontario, United States of America. 7. Department of Neurology, University of Pittsburgh, Pittsburgh, PA, United States of America.
Abstract
BACKGROUND: Parkinson's disease psychosis (PDP) has a major impact on quality of life and care partner burden; however, little is known about the lived experiences of care partners in managing PDP. OBJECTIVE: To understand how care partners of individuals with PDP experience their role and articulate their needs related to psychosis. METHODS: This was a qualitative study of semi-structured telephone interviews. Recruitment was conducted online via the clinical study matching tool, Fox Trial Finder; study activities took place remotely via telephone interviews. Transcripts of the phone interviews were analyzed by grounded theory methods, and a codebook of key themes that emerged from the analysis was developed. RESULTS: Nine care partners (all female) were interviewed. Discussion topics in the codebook included (1) care partner burden and guilt; (2) communication with medical professionals; (3) coping strategies; (4) emotional reactions of the care partner to psychosis; (5) sources of knowledge about PD psychosis; (6) attitudes towards medications for PDP; (7) strategies to care for loved ones with psychosis; (8) psychosis triggers. CONCLUSIONS: This qualitative analysis uncovers important aspects of the care partner experience, including challenges in navigating the medical system and communicating with professionals. Providers treating patients with PDP should be aware of these constraints and provide added support for strained care partners.
BACKGROUND:Parkinson's disease psychosis (PDP) has a major impact on quality of life and care partner burden; however, little is known about the lived experiences of care partners in managing PDP. OBJECTIVE: To understand how care partners of individuals with PDP experience their role and articulate their needs related to psychosis. METHODS: This was a qualitative study of semi-structured telephone interviews. Recruitment was conducted online via the clinical study matching tool, Fox Trial Finder; study activities took place remotely via telephone interviews. Transcripts of the phone interviews were analyzed by grounded theory methods, and a codebook of key themes that emerged from the analysis was developed. RESULTS: Nine care partners (all female) were interviewed. Discussion topics in the codebook included (1) care partner burden and guilt; (2) communication with medical professionals; (3) coping strategies; (4) emotional reactions of the care partner to psychosis; (5) sources of knowledge about PD psychosis; (6) attitudes towards medications for PDP; (7) strategies to care for loved ones with psychosis; (8) psychosis triggers. CONCLUSIONS: This qualitative analysis uncovers important aspects of the care partner experience, including challenges in navigating the medical system and communicating with professionals. Providers treating patients with PDP should be aware of these constraints and provide added support for strained care partners.
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