Publication
Reported effects of the SARS-CoV2 pandemic on the activities of people with cerebral palsy in Portugal
| dc.contributor.author | Virella, Daniel | |
| dc.contributor.author | Cadete, Ana | |
| dc.contributor.author | Folha, Teresa | |
| dc.contributor.author | Alvarelhão, Joaquim | |
| dc.contributor.author | Matias Dias, Carlos | |
| dc.contributor.author | on behalf of Programa de Vigilância Nacional da Paralisia Cerebral (PVNPC) | |
| dc.date.accessioned | 2022-07-08T16:10:11Z | |
| dc.date.available | 2022-07-08T16:10:11Z | |
| dc.date.issued | 2021-10-02 | |
| dc.description | Abstract publicado em: Dev Med Child Neurol. 2021 Oct;63(S3):104-105. https://onlinelibrary.wiley.com/toc/14698749/2021/63/S3 | pt_PT |
| dc.description.abstract | Background and Objective(s) People with conditions affecting their health and their ability to be autonomous and socially included are particularly sensitive to sudden, severe disturbances of the social environment, especially if they also affect formal and informal caregivers and their infrastructures of support. The voices of these individuals are seldom heard, their needs unattended. People living with cerebral palsy (CP) are paradigmatic of the potentially difficult situation presented by the SARS-CoV2 pandemic. Study Design: Project "Barómetro COVID-19 e Paralisia Cerebral" monitors how the SARS-CoV2 pandemic affects people living with CP, hearing their own voices, through a web-based self-applied, anonymous, mixed-responses survey of people with CP, their relatives, caregivers and cohabitants. It has a common core of questions with "Barómetro COVID-19 Opinião Social" (NOVA National School of Public Health). As a dynamic tool, questions can be added as indicated by the periodical, intermediate analyses. Study Participants & Setting: People living with CP were invited to participate by the Federation of Portuguese Associations for Cerebral Palsy and the Portuguese Surveillance of Cerebral Palsy. The survey is available and ongoing from April 6th 2020. Data from responders self-identified as having CP and data related to them, reported by relatives, cohabitants, caregivers and technicians were considered for this analysis. Data reported until December 26th 2020 were considered. The period includes different legal settings or social restrictions and ends with the beginning of vaccination for Covid-19 in the European Union. Materials/ Methods: Descriptive statistics were applied. Results: Data on the daily life of people having CP were retrieved from 765 surveys (112 filled by individuals with CP and 234 by relatives, caregivers and cohabitants of individuals with CP). Most of the respondents (96%) reported substantial changes in daily routines school, day-center, and/or activity center were suspended (50%), working conditions changed (24%), and 21% had been quarantined or on social isolation;87% of individuals with CP avoided being out of their home (59% did not leave their homes for at least 2 weeks). People with CP had face-to-face rehabilitation and health care sessions cancelled (29%) or choose to cancel them (21%);they had home-based basic health care services cancelled (23%) or choose to cancel them (18%). There was reported difficulty on obtaining drugs or health care related devices (20%) and primary goods (9%);8% reported loss in income. The perception of own general health was reported as good/very good by 71% and of mental health by 69%. Conclusions/ Significance: The pandemic seriously affected participation and maintenance of required care and assistance, potentially endangering abilities, competences, wellbeing and quality of life. | pt_PT |
| dc.description.version | info:eu-repo/semantics/publishedVersion | pt_PT |
| dc.identifier.citation | Virella, D.; Cadete, A.; Folha, T.; Alvarelhão, J.; Dias, C., Reported effects of the SARS-CoV2 pandemic on the activities of people with cerebral palsy in Portugal, Medicine & Child Neurology; 63(Suppl 3):104-105, 2021. | pt_PT |
| dc.identifier.uri | http://hdl.handle.net/10400.18/8107 | |
| dc.language.iso | eng | pt_PT |
| dc.peerreviewed | yes | pt_PT |
| dc.subject | COVID-19 | pt_PT |
| dc.subject | SARS-CoV-2 | pt_PT |
| dc.subject | Cerebral Palsy | pt_PT |
| dc.subject | PVNPC | pt_PT |
| dc.subject | Programa de Vigilância Nacional da Paralisia Cerebral | pt_PT |
| dc.subject | Estados de Saúde e de Doença | pt_PT |
| dc.subject | Infecções Respiratórias | pt_PT |
| dc.subject | Portugal | pt_PT |
| dc.title | Reported effects of the SARS-CoV2 pandemic on the activities of people with cerebral palsy in Portugal | pt_PT |
| dc.type | conference object | |
| dspace.entity.type | Publication | |
| oaire.citation.conferencePlace | (online) | pt_PT |
| oaire.citation.title | 75th Annual Meeting of the AACPDM-American Academy for Cerebral Palsy and Developmental Medicine, 6 October 2021 | pt_PT |
| rcaap.rights | openAccess | pt_PT |
| rcaap.type | conferenceObject | pt_PT |