The experience of care partners of patients with Parkinson’s disease psychosis

• DOI: 10.1371/journal.pone.0248968
• Publication Date: 2021-03-19T17:32:31Z
• Authors: Sneha Mantri; Emily Klawson; Steven Albert; Robyn Rapoport; Chelle Precht; Sarah Glancey; Margaret Daeschler; Eugenia Mamikonyan; Catherine M. Kopil; Connie Marras; Lana M. Chahine
• Keywords: Male; Science; Q; R; Parkinson Disease; Patient Advocacy; Middle Aged; 3. Good health; Interviews as Topic; 03 medical and health sciences; 0302 clinical medicine; Caregivers; Psychotic Disorders; Medicine; Humans; Female; Research Article

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 partners in managing PDP. Objective To understand how individuals with PDP experience their role articulate needs related to psychosis. Methods This was qualitative study semi-structured telephone interviews. Recruitment conducted online via clinical matching tool, Fox Trial Finder; activities took place remotely Transcripts phone interviews were analyzed by grounded theory methods, codebook key themes that emerged from analysis developed. Results Nine (all female) interviewed. Discussion topics included (1) burden guilt; (2) communication medical professionals; (3) coping strategies; (4) emotional reactions psychosis; (5) sources knowledge PD (6) attitudes towards medications for PDP; (7) strategies loved ones (8) triggers. Conclusions uncovers important aspects experience, including challenges navigating system communicating professionals. Providers treating patients should be aware these constraints provide added support strained partners.