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

PLoS One. 2021 Mar 19;16(3):e0248968. doi: 10.1371/journal.pone.0248968. eCollection 2021.

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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Caregivers / psychology*
  • Female
  • Humans
  • Interviews as Topic
  • Male
  • Middle Aged
  • Parkinson Disease / psychology*
  • Patient Advocacy
  • Psychotic Disorders / psychology*

Grants and funding

This study was funded by the Michael J. Fox Foundation for Parkinson's Research (michaeljfox.org, award number MJFF-007856) through the Parkinson Disease Education Consortium (PDEC). The Consortium is sponsored by the following industry partners: ACADIA Pharmaceuticals, Adamas Pharmaceuticals, Intec Pharma, Lundbeck Inc., and Sunovion Pharmaceuticals. Author SM receives research support from MJFF, from the Parkinson's Foundation (PF), and from Cerevel Therapeutics, was a paid consultant to MJFF, and received consulting fees from Deep Brain Innovations, LLC. Author CM receives research support from MJFF, from the Canadian Institutes of Health Research, from PF, and from the International Parkinsons and Movement Disorder Society. Author LMC receives research support from MJFF, receives research support from the UPMC Competitive Medical Research Fund, receives research support from the National Institutes of Health, receives royalties from Elsevier (for authorship), and receives royalties from Wolters Kluwel (for authorship). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.