Parkinson's disease patients' needs during the COVID-19 pandemic in a red zone: A framework analysis of open-ended survey questions.


Journal

European journal of neurology
ISSN: 1468-1331
Titre abrégé: Eur J Neurol
Pays: England
ID NLM: 9506311

Informations de publication

Date de publication:
10 2021
Historique:
revised: 08 01 2021
received: 13 12 2020
accepted: 14 01 2021
pubmed: 19 1 2021
medline: 22 9 2021
entrez: 18 1 2021
Statut: ppublish

Résumé

During the first phase of the COVID-19 pandemic, a lockdown was imposed in Italy. The aim of this study was to investigate the perceptions, feelings and unmet needs of Parkinson's disease (PD) patients who experienced the 2-month lockdown in a "red zone" in the northern part of Italy during the COVID-19 outbreak. The study had a descriptive design that used a cross-sectional online survey which included open-ended questions to elicit responses on the participant's feelings concerning their risk of contracting coronavirus, how their physical activity had changed, and their personal needs, dictated by their condition, which were not met in this pandemic period as compared to previous periods. Demographic data were analysed using descriptive frequencies, while the open-ended questions were analysed using thematic framework analysis. The study included 103 participants (63 men/40 women [61.17 vs. 38.83%]). Framework analysis led to the identification of four main themes: (i) fearing the risk of contracting coronavirus; (ii) reduction of physical activity; (iii) perception of the risk of not being able to access outpatient clinics or support services; and (iv) negative experiences of the important reduction in socialization. The perceptions of unmet needs appeared to be greater than the actual experience, particularly for the reduction in physical activity and the interruption of contacts with the neurologist and other specialists. This study highlights how perceptions and actual experience shape the meaning of living with PD during the pandemic. Worth noting is the divergence between perceptions and real impact in some aspects of the COVID-19 outbreak.

Sections du résumé

BACKGROUND AND PURPOSE
During the first phase of the COVID-19 pandemic, a lockdown was imposed in Italy. The aim of this study was to investigate the perceptions, feelings and unmet needs of Parkinson's disease (PD) patients who experienced the 2-month lockdown in a "red zone" in the northern part of Italy during the COVID-19 outbreak.
METHODS
The study had a descriptive design that used a cross-sectional online survey which included open-ended questions to elicit responses on the participant's feelings concerning their risk of contracting coronavirus, how their physical activity had changed, and their personal needs, dictated by their condition, which were not met in this pandemic period as compared to previous periods. Demographic data were analysed using descriptive frequencies, while the open-ended questions were analysed using thematic framework analysis.
RESULTS
The study included 103 participants (63 men/40 women [61.17 vs. 38.83%]). Framework analysis led to the identification of four main themes: (i) fearing the risk of contracting coronavirus; (ii) reduction of physical activity; (iii) perception of the risk of not being able to access outpatient clinics or support services; and (iv) negative experiences of the important reduction in socialization. The perceptions of unmet needs appeared to be greater than the actual experience, particularly for the reduction in physical activity and the interruption of contacts with the neurologist and other specialists.
CONCLUSIONS
This study highlights how perceptions and actual experience shape the meaning of living with PD during the pandemic. Worth noting is the divergence between perceptions and real impact in some aspects of the COVID-19 outbreak.

Identifiants

pubmed: 33460507
doi: 10.1111/ene.14745
pmc: PMC8014253
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

3254-3262

Informations de copyright

© 2021 European Academy of Neurology.

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Auteurs

Francesco Cavallieri (F)

Neurology Unit, Neuromotor & Rehabilitation Department, Azienda USL - IRCCS di Reggio Emilia, Reggio Emilia, Italy.
Clinical and Experimental Medicine PhD Program, University of Modena and Reggio Emilia, Modena, Italy.

Francesca Sireci (F)

Neurology Unit, Neuromotor & Rehabilitation Department, Azienda USL - IRCCS di Reggio Emilia, Reggio Emilia, Italy.

Valentina Fioravanti (V)

Neurology Unit, Neuromotor & Rehabilitation Department, Azienda USL - IRCCS di Reggio Emilia, Reggio Emilia, Italy.

Giulia Toschi (G)

Neurology Unit, Neuromotor & Rehabilitation Department, Azienda USL - IRCCS di Reggio Emilia, Reggio Emilia, Italy.

Vittorio Rispoli (V)

Neurology, Neuroscience, Head and Neck Department, University of Modena and Reggio Emilia, Modena, Italy.

Francesca Antonelli (F)

Neurology, Neuroscience, Head and Neck Department, University of Modena and Reggio Emilia, Modena, Italy.

Massimo Costantini (M)

Scientific Directorate, Azienda USL - IRCCS di Reggio Emilia, Reggio Emilia, Italy.

Luca Ghirotto (L)

Qualitative Research Unit, Azienda USL - IRCCS di Reggio Emilia, Reggio Emilia, Italy.

Franco Valzania (F)

Neurology Unit, Neuromotor & Rehabilitation Department, Azienda USL - IRCCS di Reggio Emilia, Reggio Emilia, Italy.

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