Knowledge, Responsibilities, and Peer Advice From Care Partners of Patients With Parkinson Disease Psychosis
- PMID: 33597918
- PMCID: PMC7882678
- DOI: 10.3389/fneur.2021.633645
Knowledge, Responsibilities, and Peer Advice From Care Partners of Patients With Parkinson Disease Psychosis
Abstract
Introduction: Care partners (CPs) of individuals with Parkinson disease psychosis (PDP) experience increased strain and rely on informal support networks. The objective of this study was to characterize CP responsibilities, sources of support, and peer advice. Methods: This was a mixed-methods cross-sectional study. The sample was recruited from the online Fox Insight study cohort. CPs who indicated their care recipient suffered hallucinations and/or delusions were administered a questionnaire regarding their caregiving experience to person with PDP. A free-text question asked CPs to give advice to a hypothetical peer CP. Responses to multiple-choice questions were tabulated; responses to the free-text question were grouped into advice categories. Results: 145 CP of individuals with PDP were included in this analysis, mean age (standard deviation, SD) 66.4 (9.4) years; 110 (75.9%) were women. Most (115, 79.3%) provided caregiving on a daily basis, with a range of responsibilities. Only 16 (11%) learned about PDP from a physician; communication challenges included perceived embarrassment or having to prioritize other issues in a limited appointment time. The most common peer advice was to alert the care recipient's neurologist (n = 38, 30.4%); only 8 (6.4%) suggested medication changes. Conclusion: CPs face challenges with clinician communication and learn about psychosis from a variety of informal sources. Few CPs advocate for medications to control PDP, instead preferring non-pharmacological management strategies. Peer advice favored alerting the care recipient's physician, suggesting that CPs do desire more information from the medical team.
Keywords: care partners; mixed-methods analyses; parkinson disease; peer advice; psychosis experiences.
Copyright © 2021 Mantri, Edison, Alzyoud, Albert, Daeschler, Kopil, Marras and Chahine.
Conflict of interest statement
The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.
Similar articles
-
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. PLoS One. 2021. PMID: 33740031 Free PMC article.
-
Evidence-based clinical guidelines in Kyrgyz Republic.Int J Risk Saf Med. 2015;27 Suppl 1:S45-6. doi: 10.3233/JRS-150683. Int J Risk Saf Med. 2015. PMID: 26639705
-
A 12-year population-based study of psychosis in Parkinson disease.Arch Neurol. 2010 Aug;67(8):996-1001. doi: 10.1001/archneurol.2010.166. Arch Neurol. 2010. PMID: 20697051
-
Pimavanserin: A Novel Antipsychotic for Parkinson's Disease Psychosis.Ann Pharmacother. 2017 Jun;51(6):479-487. doi: 10.1177/1060028017693029. Epub 2017 Feb 1. Ann Pharmacother. 2017. PMID: 28375643 Review.
-
Parkinson's disease psychosis: presentation, diagnosis and management.Neurodegener Dis Manag. 2017 Dec;7(6):365-376. doi: 10.2217/nmt-2017-0028. Epub 2017 Nov 21. Neurodegener Dis Manag. 2017. PMID: 29160144 Review.
Cited by
-
Emerging role of psychosis in Parkinson's disease: From clinical relevance to molecular mechanisms.World J Psychiatry. 2022 Sep 19;12(9):1127-1140. doi: 10.5498/wjp.v12.i9.1127. eCollection 2022 Sep 19. World J Psychiatry. 2022. PMID: 36186499 Free PMC article. Review.
-
Peer Mentoring Program for Informal Caregivers of Homebound Individuals With Advanced Parkinson Disease (Share the Care): Protocol for a Single-Center, Crossover Pilot Study.JMIR Res Protoc. 2022 May 26;11(5):e34750. doi: 10.2196/34750. JMIR Res Protoc. 2022. PMID: 35481819 Free PMC article.
-
Contribution of neuropsychiatric symptoms in Parkinson's disease to different domains of caregiver burden.J Neurol. 2021 Aug;268(8):2961-2972. doi: 10.1007/s00415-021-10443-7. Epub 2021 Feb 25. J Neurol. 2021. PMID: 33629181 Free PMC article.
References
-
- Gibson G, Mottram PG, Burn DJ, Hindle JV, Landau S, Samuel M, et al. . Frequency, prevalence, incidence and risk factors associated with visual hallucinations in a sample of patients with Parkinson's disease: a longitudinal 4-year study. Int J Geriatr Psychiatr. (2013) 28:626–31. 10.1002/gps.3869 - DOI - PubMed
LinkOut - more resources
Full Text Sources
Other Literature Sources
Miscellaneous