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Unmet Needs of People With Parkinson's Disease and Their Caregivers During COVID-19-Related Confinement: An Explorative Secondary Data Analysis

Self-perceived unmet needs in people with typical and atypical parkinsonism (PwP) and their caregivers, support network, personalized ways to address self-perceived unmet needs during confinement, as well as the prevalence of self-reported COVID-19 related symptoms, confirmed SARS-CoV-2 infection, a...

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Autores principales: Hanff, Anne-Marie, Pauly, Claire, Pauly, Laure, Schröder, Valerie E., Hansen, Maxime, Meyers, Guilherme Ramos, Kaysen, Anne, Hansen, Linda, Wauters, Femke, Krüger, Rejko
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7848016/
https://www.ncbi.nlm.nih.gov/pubmed/33536999
http://dx.doi.org/10.3389/fneur.2020.615172
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author Hanff, Anne-Marie
Pauly, Claire
Pauly, Laure
Schröder, Valerie E.
Hansen, Maxime
Meyers, Guilherme Ramos
Kaysen, Anne
Hansen, Linda
Wauters, Femke
Krüger, Rejko
author_facet Hanff, Anne-Marie
Pauly, Claire
Pauly, Laure
Schröder, Valerie E.
Hansen, Maxime
Meyers, Guilherme Ramos
Kaysen, Anne
Hansen, Linda
Wauters, Femke
Krüger, Rejko
author_sort Hanff, Anne-Marie
collection PubMed
description Self-perceived unmet needs in people with typical and atypical parkinsonism (PwP) and their caregivers, support network, personalized ways to address self-perceived unmet needs during confinement, as well as the prevalence of self-reported COVID-19 related symptoms, confirmed SARS-CoV-2 infection, and self-reported COVID-19 related hospitalization in Luxembourg and the Greater Region were assessed. From 18th March to 10th April 2020, 679 PwP were contacted by phone. Data was collected in the form of a semi-structured interview. The thematic synthesis identified 25 themes where PwP need to be supported in order to cope with consequences of the pandemic, and to adapt their daily and health-related activities. The present work highlights that in the context of personalized medicine, depending on the individual needs of support of the patient the identified self-perceived unmet needs were addressed in various ways ranging from one-directed information over interaction up to proactive counseling and monitoring. Family and health professionals, but also other support systems were taking care of the unmet needs of PwP (e.g., shopping, picking-up medication, etc.) during the pandemic. 7/606 PwP (1.15%) reported COVID-19 related symptoms, 4/606 (0.66%) underwent a rRT-PCR-based diagnostic test and 2/606 (0.33%) were confirmed as SARS-CoV-2 positive. None of these PwP reported being hospitalized due to COVID-19. Our results will allow health professionals to expand their services in a meaningful way i.e., personalize their support in the identified themes and thus improve the healthcare of PwP in times of crisis.
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spelling pubmed-78480162021-02-02 Unmet Needs of People With Parkinson's Disease and Their Caregivers During COVID-19-Related Confinement: An Explorative Secondary Data Analysis Hanff, Anne-Marie Pauly, Claire Pauly, Laure Schröder, Valerie E. Hansen, Maxime Meyers, Guilherme Ramos Kaysen, Anne Hansen, Linda Wauters, Femke Krüger, Rejko Front Neurol Neurology Self-perceived unmet needs in people with typical and atypical parkinsonism (PwP) and their caregivers, support network, personalized ways to address self-perceived unmet needs during confinement, as well as the prevalence of self-reported COVID-19 related symptoms, confirmed SARS-CoV-2 infection, and self-reported COVID-19 related hospitalization in Luxembourg and the Greater Region were assessed. From 18th March to 10th April 2020, 679 PwP were contacted by phone. Data was collected in the form of a semi-structured interview. The thematic synthesis identified 25 themes where PwP need to be supported in order to cope with consequences of the pandemic, and to adapt their daily and health-related activities. The present work highlights that in the context of personalized medicine, depending on the individual needs of support of the patient the identified self-perceived unmet needs were addressed in various ways ranging from one-directed information over interaction up to proactive counseling and monitoring. Family and health professionals, but also other support systems were taking care of the unmet needs of PwP (e.g., shopping, picking-up medication, etc.) during the pandemic. 7/606 PwP (1.15%) reported COVID-19 related symptoms, 4/606 (0.66%) underwent a rRT-PCR-based diagnostic test and 2/606 (0.33%) were confirmed as SARS-CoV-2 positive. None of these PwP reported being hospitalized due to COVID-19. Our results will allow health professionals to expand their services in a meaningful way i.e., personalize their support in the identified themes and thus improve the healthcare of PwP in times of crisis. Frontiers Media S.A. 2021-01-18 /pmc/articles/PMC7848016/ /pubmed/33536999 http://dx.doi.org/10.3389/fneur.2020.615172 Text en Copyright © 2021 Hanff, Pauly, Pauly, Schröder, Hansen, Meyers, Kaysen, Hansen, Wauters and Krüger. http://creativecommons.org/licenses/by/4.0/ This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Neurology
Hanff, Anne-Marie
Pauly, Claire
Pauly, Laure
Schröder, Valerie E.
Hansen, Maxime
Meyers, Guilherme Ramos
Kaysen, Anne
Hansen, Linda
Wauters, Femke
Krüger, Rejko
Unmet Needs of People With Parkinson's Disease and Their Caregivers During COVID-19-Related Confinement: An Explorative Secondary Data Analysis
title Unmet Needs of People With Parkinson's Disease and Their Caregivers During COVID-19-Related Confinement: An Explorative Secondary Data Analysis
title_full Unmet Needs of People With Parkinson's Disease and Their Caregivers During COVID-19-Related Confinement: An Explorative Secondary Data Analysis
title_fullStr Unmet Needs of People With Parkinson's Disease and Their Caregivers During COVID-19-Related Confinement: An Explorative Secondary Data Analysis
title_full_unstemmed Unmet Needs of People With Parkinson's Disease and Their Caregivers During COVID-19-Related Confinement: An Explorative Secondary Data Analysis
title_short Unmet Needs of People With Parkinson's Disease and Their Caregivers During COVID-19-Related Confinement: An Explorative Secondary Data Analysis
title_sort unmet needs of people with parkinson's disease and their caregivers during covid-19-related confinement: an explorative secondary data analysis
topic Neurology
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7848016/
https://www.ncbi.nlm.nih.gov/pubmed/33536999
http://dx.doi.org/10.3389/fneur.2020.615172
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