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Publication
Diagnóstico de Perturbação do Espetro do Autismo: o impacto na família e a vivência em tempos de pandemia
| Name: | Description: | Size: | Format: | |
|---|---|---|---|---|
| 35319 | 5.29 MB | Adobe PDF |
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Abstract(s)
A pandemia da COVID-19 trouxe consequências para a vida de todas as pessoas à escala mundial obrigando a aplicação de medidas preventivas para mitigar a propagação do vírus assim tendo como consequência o impacto direto e indireto na vida de todos nós, sobretudo, na população mais vulnerável. Posto isto, tornou-se urgente perceber o impacto desta pandemia na vida das famílias que têm crianças com Perturbação do Espetro do Autismo de forma a avaliar-se o impacto e perceber que tipo de estratégias poderiam ser aplicadas para apoiar estas famílias após o aparecimento da pandemia.
Numa primeira instância, foi realizada uma revisão da literatura de forma a conhecer-se o estado da arte no que diz respeito à PEA e às vivências familiares que o diagnóstico implica de uma forma geral e particularmente nos tempos de pandemia. Através da revisão, pode-se concluir que os impactos das medidas preventivas impostas pelos governos afetaram a vida das crianças e das suas famílias a nível mundial. Assim, o presente estudo tem como objetivo caracterizar o impacto da pandemia da COVID-19 nas famílias cujos filhos têm diagnóstico de Perturbação do Espetro do Autismo. A recolha de dados decorreu entre maio e dezembro de 2021, tendo participado 69 portugueses dos quais 83,6% são mães, com idades compreendidas entre os 27 e os 53 anos (M=39,52; DP= 6,56). Quando considerada a idade dos filhos com PEA esta distingue-se entre crianças do sexo masculino com idades compreendidas entre os 2 e os 17 anos (M=7,0 ; DP=3,848 ) e do sexo feminino (M=7,55 ; DP= 4,08), com idades compreendidas entre os 2 e os 12 anos. Os participantes responderam a um questionário sociodemográfico e clínico com o objetivo de recolher dados sociodemográficos, contextualizar sobre o diagnóstico, o impacto que este provoca nas dimensões familiares, impacto financeiro, mudanças a nível social, alterações impostas pela pandemia da COVID-19 e por fim, os tipos de apoios disponibilizados antes e durante a pandemia, que foram administrados eletronicamente, através do Google Forms. De uma forma geral, os resultados indicam que a confirmação do diagnóstico gera nas famílias sentimentos de insegurança, apreensão e impotência caracterizando-se como um momento de difícil aceitação, acabando por implicar uma reestruturação familiar, uma vez que estas sofrem um impacto em diversas áreas. Após o aparecimento da pandemia da COVID-19, as famílias vivenciaram ainda mais desafios, impactando de forma direta as rotinas diárias, uma vez que se viram condicionadas no acesso aos cuidados de saúde especializados para crianças com PEA. Tornando evidente a pertinência da realização de mais investigações que foquem esta problemática.
The COVID-19 pandemic has had consequences for the lives of all people worldwide forcing the application of preventive measures to mitigate the spread of the virus, thus having the direct and indirect impact on the lives of all of us, especially the most vulnerable population. That said, it has become urgent to understand the impact of this pandemic on the lives of families who have children with Autism Spectrum Disorder in order to assess the impact and understand what kind of strategies could be applied to support these families after the appearance of the pandemic. In a first instance, a literature review was carried out in order to know the state of the art regarding the ASD and the family experiences that the diagnosis implies in general and particularly in the pandemic. Through the review, it can be concluded that the impacts of preventive measures imposed by governments affected the lives of children and their families worldwide. Thus, the present study aims to characterize the impact of the COVID-19 pandemic on families whose children are diagnoses with ASD. The data was collected between May and December of 2021, with the participation of 69 portuguese, of which 83,6% are mothers, aged between 27 and 53 years (M=39,53; SD= 6,56). When considering the age of children aged between 2 and 17 years (M=7,55; SD=3,85) and female children (M=7,55; SD=4,08), aged between 2 and 12 years. Participants answered a sociodemographic and clinical questionnaire with the aim of collecting sociodemographic data, contextualizing the diagnosis, the impact it has on family dimensions, financial impact, social changes, changes imposed by the COVID-19 pandemic and finally, the types of support available before and during the pandemic, which were administered electronically, through Google Forms. In general, the results indicate that the confirmation of the diagnosis generates feelings of insecurity, apprehension and impotence in families, characterizing it as a moment of difficult acceptance, ending up implying a family restructuring, since they suffer and impact in several areas. After the emergence of the COVID-19 pandemic, families experienced even more challenges, directly impacting in daily routines, as they found themselves conditioned in accessing specialized health care for children with ASD. Making evident the relevance of carrying out more investigations that focus on this problem.
The COVID-19 pandemic has had consequences for the lives of all people worldwide forcing the application of preventive measures to mitigate the spread of the virus, thus having the direct and indirect impact on the lives of all of us, especially the most vulnerable population. That said, it has become urgent to understand the impact of this pandemic on the lives of families who have children with Autism Spectrum Disorder in order to assess the impact and understand what kind of strategies could be applied to support these families after the appearance of the pandemic. In a first instance, a literature review was carried out in order to know the state of the art regarding the ASD and the family experiences that the diagnosis implies in general and particularly in the pandemic. Through the review, it can be concluded that the impacts of preventive measures imposed by governments affected the lives of children and their families worldwide. Thus, the present study aims to characterize the impact of the COVID-19 pandemic on families whose children are diagnoses with ASD. The data was collected between May and December of 2021, with the participation of 69 portuguese, of which 83,6% are mothers, aged between 27 and 53 years (M=39,53; SD= 6,56). When considering the age of children aged between 2 and 17 years (M=7,55; SD=3,85) and female children (M=7,55; SD=4,08), aged between 2 and 12 years. Participants answered a sociodemographic and clinical questionnaire with the aim of collecting sociodemographic data, contextualizing the diagnosis, the impact it has on family dimensions, financial impact, social changes, changes imposed by the COVID-19 pandemic and finally, the types of support available before and during the pandemic, which were administered electronically, through Google Forms. In general, the results indicate that the confirmation of the diagnosis generates feelings of insecurity, apprehension and impotence in families, characterizing it as a moment of difficult acceptance, ending up implying a family restructuring, since they suffer and impact in several areas. After the emergence of the COVID-19 pandemic, families experienced even more challenges, directly impacting in daily routines, as they found themselves conditioned in accessing specialized health care for children with ASD. Making evident the relevance of carrying out more investigations that focus on this problem.
Description
Keywords
Perturbação do Espetro do Autismo (PEA) Família Pandemia COVID-19 Autism Spectrum Disorder (ASD) Family COVID-19 pandemic