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...
| Main Authors: | , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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Frontiers Media S.A.
2021-01-01
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| Series: | Frontiers in Neurology |
| Subjects: | |
| Online Access: | https://www.frontiersin.org/articles/10.3389/fneur.2020.615172/full |
| _version_ | 1818676243017498624 |
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| author | Anne-Marie Hanff Claire Pauly Claire Pauly Laure Pauly Laure Pauly Valerie E. Schröder Valerie E. Schröder Maxime Hansen Maxime Hansen Guilherme Ramos Meyers Guilherme Ramos Meyers Anne Kaysen Linda Hansen Femke Wauters Rejko Krüger Rejko Krüger Rejko Krüger |
| author_facet | Anne-Marie Hanff Claire Pauly Claire Pauly Laure Pauly Laure Pauly Valerie E. Schröder Valerie E. Schröder Maxime Hansen Maxime Hansen Guilherme Ramos Meyers Guilherme Ramos Meyers Anne Kaysen Linda Hansen Femke Wauters Rejko Krüger Rejko Krüger Rejko Krüger |
| author_sort | Anne-Marie Hanff |
| collection | DOAJ |
| 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. |
| first_indexed | 2024-12-17T08:40:22Z |
| format | Article |
| id | doaj.art-d13cb8be311841408167badffcdc3db2 |
| institution | Directory Open Access Journal |
| issn | 1664-2295 |
| language | English |
| last_indexed | 2024-12-17T08:40:22Z |
| publishDate | 2021-01-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Neurology |
| spelling | doaj.art-d13cb8be311841408167badffcdc3db22022-12-21T21:56:22ZengFrontiers Media S.A.Frontiers in Neurology1664-22952021-01-011110.3389/fneur.2020.615172615172Unmet Needs of People With Parkinson's Disease and Their Caregivers During COVID-19-Related Confinement: An Explorative Secondary Data AnalysisAnne-Marie Hanff0Claire Pauly1Claire Pauly2Laure Pauly3Laure Pauly4Valerie E. Schröder5Valerie E. Schröder6Maxime Hansen7Maxime Hansen8Guilherme Ramos Meyers9Guilherme Ramos Meyers10Anne Kaysen11Linda Hansen12Femke Wauters13Rejko Krüger14Rejko Krüger15Rejko Krüger16Transversal Translational Medicine, Luxembourg Institute of Health, Strassen, LuxembourgParkinson Research Clinic, Centre Hospitalier de Luxembourg, Luxembourg, LuxembourgTranslational Neuroscience, Luxembourg Centre for Systems Biomedicine, University of Luxembourg, Esch-Belval, LuxembourgParkinson Research Clinic, Centre Hospitalier de Luxembourg, Luxembourg, LuxembourgTranslational Neuroscience, Luxembourg Centre for Systems Biomedicine, University of Luxembourg, Esch-Belval, LuxembourgParkinson Research Clinic, Centre Hospitalier de Luxembourg, Luxembourg, LuxembourgTranslational Neuroscience, Luxembourg Centre for Systems Biomedicine, University of Luxembourg, Esch-Belval, LuxembourgTransversal Translational Medicine, Luxembourg Institute of Health, Strassen, LuxembourgParkinson Research Clinic, Centre Hospitalier de Luxembourg, Luxembourg, LuxembourgParkinson Research Clinic, Centre Hospitalier de Luxembourg, Luxembourg, LuxembourgTranslational Neuroscience, Luxembourg Centre for Systems Biomedicine, University of Luxembourg, Esch-Belval, LuxembourgTranslational Neuroscience, Luxembourg Centre for Systems Biomedicine, University of Luxembourg, Esch-Belval, LuxembourgParkinson Research Clinic, Centre Hospitalier de Luxembourg, Luxembourg, LuxembourgParkinson Research Clinic, Centre Hospitalier de Luxembourg, Luxembourg, LuxembourgTransversal Translational Medicine, Luxembourg Institute of Health, Strassen, LuxembourgParkinson Research Clinic, Centre Hospitalier de Luxembourg, Luxembourg, LuxembourgTranslational Neuroscience, Luxembourg Centre for Systems Biomedicine, University of Luxembourg, Esch-Belval, LuxembourgSelf-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.https://www.frontiersin.org/articles/10.3389/fneur.2020.615172/fullCOVIDneeds assessmenthealth services needs and demandParkinson diseasepandemicqualitative research |
| spellingShingle | Anne-Marie Hanff Claire Pauly Claire Pauly Laure Pauly Laure Pauly Valerie E. Schröder Valerie E. Schröder Maxime Hansen Maxime Hansen Guilherme Ramos Meyers Guilherme Ramos Meyers Anne Kaysen Linda Hansen Femke Wauters Rejko Krüger Rejko Krüger Rejko Krüger Unmet Needs of People With Parkinson's Disease and Their Caregivers During COVID-19-Related Confinement: An Explorative Secondary Data Analysis Frontiers in Neurology COVID needs assessment health services needs and demand Parkinson disease pandemic qualitative research |
| 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 | COVID needs assessment health services needs and demand Parkinson disease pandemic qualitative research |
| url | https://www.frontiersin.org/articles/10.3389/fneur.2020.615172/full |
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