Reported effects of the SARS-CoV2 pandemic on the activities of people with cerebral palsy in Portugal
Abstract publicado em: Dev Med Child Neurol. 2021 Oct;63(S3):104-105. https://onlinelibrary.wiley.com/toc/14698749/2021/63/S3 ; 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 ...