What do parents of children with autism expect from participation in research? A community survey about early autism studies

Detalhes bibliográficos
Autor(a) principal: Fletcher-Watson, S.
Data de Publicação: 2019
Outros Autores: Larsen, K., Salomone, E., Members of the COST ESSEA Working Groups
Tipo de documento: Artigo
Idioma: eng
Título da fonte: Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
Texto Completo: http://hdl.handle.net/10400.18/5575
Resumo: Members of the COST ESSEA Working Groups: Fabio Apicella, Bonnie Auyeung, Stepanka Beranova, Frederique Bonnet-Brilhault, Ricardo Canal Bedia, Tony Charman, Natasha Chericoni, Ines C Conceicao, Kim Davies, Teresa Faroni, Marie Gomot, Emily Jones, Anett Kaale, Katarzyna Kapica, Rafal Kawa, Anneil Kylliainen, Jeremy LeFort-Besnard, Joelle Malvy, Sara Manso de Dios, Silvana Markovska-Simoska, Inbal Millo, Natercia Miranda, Greg Pasco, Ewa Pisula, Marija Raleva, Bernadette Roge, Synnve Schjolberg, Przemyslaw Tomalski, Astrid M Vicente and Nurit Yirmiya.
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spelling What do parents of children with autism expect from participation in research? A community survey about early autism studiesAutism Spectrum DdisorderDevelopmentEthicsInfancyParentsPerturbações do Desenvolvimento Infantil e Saúde MentalMembers of the COST ESSEA Working Groups: Fabio Apicella, Bonnie Auyeung, Stepanka Beranova, Frederique Bonnet-Brilhault, Ricardo Canal Bedia, Tony Charman, Natasha Chericoni, Ines C Conceicao, Kim Davies, Teresa Faroni, Marie Gomot, Emily Jones, Anett Kaale, Katarzyna Kapica, Rafal Kawa, Anneil Kylliainen, Jeremy LeFort-Besnard, Joelle Malvy, Sara Manso de Dios, Silvana Markovska-Simoska, Inbal Millo, Natercia Miranda, Greg Pasco, Ewa Pisula, Marija Raleva, Bernadette Roge, Synnve Schjolberg, Przemyslaw Tomalski, Astrid M Vicente and Nurit Yirmiya.Member of the COST ESSEA Working Groups: Astrid M Vicente (INSA)Engagement with stakeholders is an essential part of the research process. This is particularly the case for early autism research with infant cohorts and their families, where a range of ethical issues are pertinent. Here, we report on a large survey of parents who have a child on the autism spectrum (n = 1040) which specifically probed attitudes to early autism research. The large majority of parents showed positive attitudes overall, and these were associated with greater access to services, higher service quality ratings and higher rates of intellectual disability among their children. Parents valued the scientific goals of research, but half of parents also reported that an intervention component would be an essential prerequisite for them to participate in research. If enrolled in a study, parents were positive about most commonly used measures though less favourably disposed towards brain scans for children. They valued direct contact with the research team and openness in data sharing. We interpret our findings in terms of lessons for the early autism research community and for stakeholder engagement projects.The author(s) disclosed receipt of the following financial support for the research, authorship and/or publication of this article: This work was supported by the European Co-operation in Science and Technology (COST) Action BM1004 Enhancing the Scientific Study of Early Autism (ESSEA).SAGE Publications / National Autistic SocietyRepositório Científico do Instituto Nacional de SaúdeFletcher-Watson, S.Larsen, K.Salomone, E.Members of the COST ESSEA Working Groups2019-11-11T01:30:19Z20192019-01-01T00:00:00Zinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleapplication/pdfhttp://hdl.handle.net/10400.18/5575engAutism. 2019;23(1):175-186. doi: 10.1177/1362361317728436. Epub 2017 Nov 101362-361310.1177/1362361317728436info:eu-repo/semantics/embargoedAccessreponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãoinstacron:RCAAP2023-07-20T15:40:57Zoai:repositorio.insa.pt:10400.18/5575Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireopendoar:71602024-03-19T18:40:16.860112Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãofalse
dc.title.none.fl_str_mv What do parents of children with autism expect from participation in research? A community survey about early autism studies
title What do parents of children with autism expect from participation in research? A community survey about early autism studies
spellingShingle What do parents of children with autism expect from participation in research? A community survey about early autism studies
Fletcher-Watson, S.
Autism Spectrum Ddisorder
Development
Ethics
Infancy
Parents
Perturbações do Desenvolvimento Infantil e Saúde Mental
title_short What do parents of children with autism expect from participation in research? A community survey about early autism studies
title_full What do parents of children with autism expect from participation in research? A community survey about early autism studies
title_fullStr What do parents of children with autism expect from participation in research? A community survey about early autism studies
title_full_unstemmed What do parents of children with autism expect from participation in research? A community survey about early autism studies
title_sort What do parents of children with autism expect from participation in research? A community survey about early autism studies
author Fletcher-Watson, S.
author_facet Fletcher-Watson, S.
Larsen, K.
Salomone, E.
Members of the COST ESSEA Working Groups
author_role author
author2 Larsen, K.
Salomone, E.
Members of the COST ESSEA Working Groups
author2_role author
author
author
dc.contributor.none.fl_str_mv Repositório Científico do Instituto Nacional de Saúde
dc.contributor.author.fl_str_mv Fletcher-Watson, S.
Larsen, K.
Salomone, E.
Members of the COST ESSEA Working Groups
dc.subject.por.fl_str_mv Autism Spectrum Ddisorder
Development
Ethics
Infancy
Parents
Perturbações do Desenvolvimento Infantil e Saúde Mental
topic Autism Spectrum Ddisorder
Development
Ethics
Infancy
Parents
Perturbações do Desenvolvimento Infantil e Saúde Mental
description Members of the COST ESSEA Working Groups: Fabio Apicella, Bonnie Auyeung, Stepanka Beranova, Frederique Bonnet-Brilhault, Ricardo Canal Bedia, Tony Charman, Natasha Chericoni, Ines C Conceicao, Kim Davies, Teresa Faroni, Marie Gomot, Emily Jones, Anett Kaale, Katarzyna Kapica, Rafal Kawa, Anneil Kylliainen, Jeremy LeFort-Besnard, Joelle Malvy, Sara Manso de Dios, Silvana Markovska-Simoska, Inbal Millo, Natercia Miranda, Greg Pasco, Ewa Pisula, Marija Raleva, Bernadette Roge, Synnve Schjolberg, Przemyslaw Tomalski, Astrid M Vicente and Nurit Yirmiya.
publishDate 2019
dc.date.none.fl_str_mv 2019-11-11T01:30:19Z
2019
2019-01-01T00:00:00Z
dc.type.status.fl_str_mv info:eu-repo/semantics/publishedVersion
dc.type.driver.fl_str_mv info:eu-repo/semantics/article
format article
status_str publishedVersion
dc.identifier.uri.fl_str_mv http://hdl.handle.net/10400.18/5575
url http://hdl.handle.net/10400.18/5575
dc.language.iso.fl_str_mv eng
language eng
dc.relation.none.fl_str_mv Autism. 2019;23(1):175-186. doi: 10.1177/1362361317728436. Epub 2017 Nov 10
1362-3613
10.1177/1362361317728436
dc.rights.driver.fl_str_mv info:eu-repo/semantics/embargoedAccess
eu_rights_str_mv embargoedAccess
dc.format.none.fl_str_mv application/pdf
dc.publisher.none.fl_str_mv SAGE Publications / National Autistic Society
publisher.none.fl_str_mv SAGE Publications / National Autistic Society
dc.source.none.fl_str_mv reponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação
instacron:RCAAP
instname_str Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação
instacron_str RCAAP
institution RCAAP
reponame_str Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
collection Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
repository.name.fl_str_mv Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação
repository.mail.fl_str_mv
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