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

Fletcher-Watson, S.; Larsen, K.; Salomone, E.; Members of the COST ESSEA Working Groups

Publication

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

2019Journal article

dc.contributor.author	Fletcher-Watson, S.
dc.contributor.author	Larsen, K.
dc.contributor.author	Salomone, E.
dc.contributor.author	Members of the COST ESSEA Working Groups
dc.date.accessioned	2018-07-12T13:45:45Z
dc.date.available	2019-11-11T01:30:19Z
dc.date.issued	2019
dc.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.	pt_PT
dc.description	Member of the COST ESSEA Working Groups: Astrid M Vicente (INSA)	pt_PT
dc.description.abstract	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.	pt_PT
dc.description.sponsorship	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).	pt_PT
dc.description.version	info:eu-repo/semantics/publishedVersion	pt_PT
dc.identifier.citation	Autism. 2019;23(1):175-186. doi: 10.1177/1362361317728436. Epub 2017 Nov 10	pt_PT
dc.identifier.doi	10.1177/1362361317728436	pt_PT
dc.identifier.issn	1362-3613
dc.identifier.uri	http://hdl.handle.net/10400.18/5575
dc.language.iso	eng	pt_PT
dc.peerreviewed	yes	pt_PT
dc.publisher	SAGE Publications / National Autistic Society	pt_PT
dc.relation.publisherversion	http://journals.sagepub.com/doi/abs/10.1177/1362361317728436?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%3dpubmed	pt_PT
dc.rights.uri	http://creativecommons.org/licenses/by-nc-nd/4.0/	pt_PT
dc.subject	Autism Spectrum Ddisorder	pt_PT
dc.subject	Development	pt_PT
dc.subject	Ethics	pt_PT
dc.subject	Infancy	pt_PT
dc.subject	Parents	pt_PT
dc.subject	Perturbações do Desenvolvimento Infantil e Saúde Mental	pt_PT
dc.title	What do parents of children with autism expect from participation in research? A community survey about early autism studies	pt_PT
dc.type	journal article
dspace.entity.type	Publication
oaire.citation.endPage	12	pt_PT
oaire.citation.startPage	1	pt_PT
rcaap.rights	embargoedAccess	pt_PT
rcaap.type	article	pt_PT