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Publication
Barómetro COVID-19 e Paralisia Cerebral: um instrumento para captar como a pandemia da COVID-19 afeta as pessoas que vivem com paralisia cerebral
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Advisor(s)
Abstract(s)
As pessoas com condições que afetam a sua saúde e as suas capacidades
de autonomia e de inclusão são particularmente sensíveis a alterações
súbitas e intensas dos contextos sociais onde se integram, especialmente
quando afetam também os seus cuidadores formais e informais e as suas
estruturas de apoio. Frequentemente, estes cidadãos têm dificuldade em
fazer ouvir a sua voz, de modo a expressarem as suas necessidades. As
pessoas que vivem com paralisia cerebral (PC) são paradigmáticas desta
condição e a pandemia da COVID-19 colocou-as numa situação potencialmente
difícil. O projeto Barómetro COVID-19 e Paralisia Cerebral monitoriza
“na primeira pessoa” como a pandemia da COVID-19 está a afetar as
pessoas que vivem com PC e como essa vivência muda à medida que a
pandemia evolui. O Programa de Vigilância Nacional da Paralisia Cerebral
associou-se à Escola Nacional de Saúde Pública no projeto Barómetro
COVID-19: Opinião Social, para adaptar um instrumento baseado na internet
às pessoas que têm PC e os seus familiares, cuidadores e conviventes.
É um inquérito de autopreenchimento, de respostas mistas, voluntário
e anónimo, com carácter prospetivo, descritivo e de medidas repetidas.
A amostragem é não probabilística, de conveniência, obtida por convite
público reiterado. O corpo principal de questões, comum ao Barómetro
COVID-19: Opinião Social e ao Barómetro COVID-19 e Paralisia Cerebral,
permite às pessoas que vivem com PC descreverem-se, comparando-se
com a amostra global; algumas questões específicas permitem conhecer
melhor as suas particularidades. O carácter dinâmico do instrumento permite
atualizá-lo, adicionando questões requeridas pelas análises periódicas
das respostas. Com o Barómetro COVID-19 e Paralisia Cerebral são
obtidos indicadores de atitudes, comportamento, necessidades, apoios e
repercussão na saúde global e mental. Estes indicadores são divulgados
periodicamente através de um Boletim online, apresentando-os em vários
níveis de diferenciação e de evolução temporal da pandemia.
People having 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 affecting also formal and informal caregivers as well 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 COVID-19 pandemic. project Barómetro COVID-19 e Paralisia Cerebral monitors, as the pandemic develops, how the COVID-19 pandemic affects people living with CP, hearing their own voices. The Programme of National Surveillance of Cerebral Palsy (Programa de Vigilância Nacional da Paralisia Cerebral) partnered with the National School of Public Health (Escola Nacional de Saúde Pública) on the project Barómetro COVID-19: Opinião Social to adapt a web-based tool to people having CP, their relatives, caregivers and cohabitants. It is a self-applied, voluntary, anonymous, mixed-responses survey, to be answered prospectively by a non-probabilistic, convenience sample of people responding to public invitation. A common core of questions for both Barómetro COVID-19: Opinião Social and Barómetro COVID-19 e Paralisia Cerebral allows people living with CP to describe themselves and to be compared with the global sample; additional specific questions approach their peculiarities. Being a dynamic tool, questions can be added as indicated by the periodical, intermediate analyses. Barómetro COVID-19 e Paralisia Cerebral provides indicators on attitudes, behaviours, needs, supports and impact on global and mental health. Indicators are periodically published as an on-line Bulletin, at different group levels and reflecting the temporal evolution of the pandemic.
People having 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 affecting also formal and informal caregivers as well 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 COVID-19 pandemic. project Barómetro COVID-19 e Paralisia Cerebral monitors, as the pandemic develops, how the COVID-19 pandemic affects people living with CP, hearing their own voices. The Programme of National Surveillance of Cerebral Palsy (Programa de Vigilância Nacional da Paralisia Cerebral) partnered with the National School of Public Health (Escola Nacional de Saúde Pública) on the project Barómetro COVID-19: Opinião Social to adapt a web-based tool to people having CP, their relatives, caregivers and cohabitants. It is a self-applied, voluntary, anonymous, mixed-responses survey, to be answered prospectively by a non-probabilistic, convenience sample of people responding to public invitation. A common core of questions for both Barómetro COVID-19: Opinião Social and Barómetro COVID-19 e Paralisia Cerebral allows people living with CP to describe themselves and to be compared with the global sample; additional specific questions approach their peculiarities. Being a dynamic tool, questions can be added as indicated by the periodical, intermediate analyses. Barómetro COVID-19 e Paralisia Cerebral provides indicators on attitudes, behaviours, needs, supports and impact on global and mental health. Indicators are periodically published as an on-line Bulletin, at different group levels and reflecting the temporal evolution of the pandemic.
Description
Keywords
COVID-19 Pandemia da COVID-19 Infeção por SARS-CoV-2 Confinamento Impacto da Pandemia Paralisia Cerebral Barómetro COVID-19 e Paralisia Cerebral Programa de Vigilância Nacional da Paralisia Cerebral PVNPC Saúde Pública Portugal
Pedagogical Context
Citation
Boletim Epidemiológico Observações. 2020;9(Supl 12):33-39
Publisher
Instituto Nacional de Saúde Doutor Ricardo Jorge, IP