Abstract
BackgroundParkinson’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.ObjectiveTo understand how care partners of individuals with PDP experience their role and articulate their needs related to psychosis.MethodsThis 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.ResultsNine 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.ConclusionsThis 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.
Highlights
Psychosis is common in advanced Parkinson’s disease (PD), with a cumulative prevalence of over 80% [1]
Parkinson’s disease psychosis (PDP) has a major impact on quality of life and care partner burden; little is known about the lived experiences of care partners in managing PD psychosis (PDP)
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
Summary
Psychosis is common in advanced Parkinson’s disease (PD), with a cumulative prevalence of over 80% [1]. Despite increasing recognition of and treatment strategies for PDP in recent years, little is known about the lived experience of care partners navigating this challenging phase of illness. Prior qualitative research has suggested that care partners may have difficulties communicating with medical providers about both motor and non-motor aspects of disease [5, 6]; understanding these difficulties would be valuable to design strategies to improve caregiver-physician communication In this study, we examined semi-structured interviews with care partners to discern common struggles around communication with providers, navigating available community resources, and the economic and psychosocial impact of caring for a loved one with PDP. Parkinson’s disease psychosis (PDP) has a major impact on quality of life and care partner burden; little is known about the lived experiences of care partners in managing PDP
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