Determinants of satisfaction with the detection process of autism in Europe: Results from the ASDEU study

Detalhes bibliográficos
Autor(a) principal: Guillon, Quentin
Data de Publicação: 2022
Outros Autores: Baduel, Sophie, Bejarano-Martín, Álvaro, Canal-Bedia, Ricardo, MagÁn-Maganto, María, FernÁndez-Álvarez, Clara, Martín-Cilleros, María Victoria, SÁnchez-Gómez, María Cruz, García-Primo, Patricia, Rose-Sweeney, Mary, Boilson, Andrew, LinertovÁ, Renata, Roeyers, Herbert, Van der Paelt, Sara, Schendel, Diana, Warberg, Christine Kloster, Cramer, Susanne, Narzisi, Antonio, Muratori, Filippo, Scattoni, María Luisa, Moilanen, Irma, Yliherva, Anneli, Saemundsen, Evald, Jonsdottir, Sigridur Loa, Efrim-Budisteanu, Magdalena, Arghir, Aurora, Papuc, Sorina Mihaela, Vicente, Astrid, Rasga, Celia, Xenia Kafka, Johanna, Poustka, Luise, Kothgassner, Oswald D., Kawa, Rafal, Pisula, Ewa, Sellers, Tracey, Posada de la Paz, Manuel, Rogé, Bernadette
Tipo de documento: Artigo
Idioma: eng
Título da fonte: Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
Texto Completo: http://hdl.handle.net/10400.18/8556
Resumo: Professional guidance and support in response to first concerns appears to be an important predictor of the level of satisfaction with the detection process of autism in young children. In this study, we analyzed the views of 1342 family members, including 1278 parents, who completed an online survey form collecting information about their experience and satisfaction with the early detection of autism in their child. Specifically, we were interested in how specific experiences with the detection process relate to the satisfaction with it and whether we could identify important predictors of satisfaction. The detection process is an emotionally charged period for parents, often described as painful, chaotic, and lengthy. A better understanding of their experiences is important to take appropriate action to improve the detection process. In our sample, the level of satisfaction with the detection process varied greatly from one respondent to another. Among the different experiences we considered, whether or not respondents received professional guidance and support in response to first concerns explained most of this variation. We also found that difficulty finding information about detection services, lack of professional guidance and support in response to first concerns, having to find a diagnostic service on one's own, and longer delays between confirmation of concerns and first appointment with a specialist were experiences associated with a greater likelihood of being unsatisfied. The findings of this study highlight the importance of the parent-professional relationship in the detection process and have important practical implications for health administrations to improve the detection process.
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spelling Determinants of satisfaction with the detection process of autism in Europe: Results from the ASDEU studyAutismEarly DetectionParents’ ExperiencesSatisfactionPerturbações do Desenvolvimento Infantil e Saúde MentalProfessional guidance and support in response to first concerns appears to be an important predictor of the level of satisfaction with the detection process of autism in young children. In this study, we analyzed the views of 1342 family members, including 1278 parents, who completed an online survey form collecting information about their experience and satisfaction with the early detection of autism in their child. Specifically, we were interested in how specific experiences with the detection process relate to the satisfaction with it and whether we could identify important predictors of satisfaction. The detection process is an emotionally charged period for parents, often described as painful, chaotic, and lengthy. A better understanding of their experiences is important to take appropriate action to improve the detection process. In our sample, the level of satisfaction with the detection process varied greatly from one respondent to another. Among the different experiences we considered, whether or not respondents received professional guidance and support in response to first concerns explained most of this variation. We also found that difficulty finding information about detection services, lack of professional guidance and support in response to first concerns, having to find a diagnostic service on one's own, and longer delays between confirmation of concerns and first appointment with a specialist were experiences associated with a greater likelihood of being unsatisfied. The findings of this study highlight the importance of the parent-professional relationship in the detection process and have important practical implications for health administrations to improve the detection process.The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by the European Parliament and managed by the European Union, DGSANCO, (Ref: SANCO/2014/C2/035).SAGE PublicationsRepositório Científico do Instituto Nacional de SaúdeGuillon, QuentinBaduel, SophieBejarano-Martín, ÁlvaroCanal-Bedia, RicardoMagÁn-Maganto, MaríaFernÁndez-Álvarez, ClaraMartín-Cilleros, María VictoriaSÁnchez-Gómez, María CruzGarcía-Primo, PatriciaRose-Sweeney, MaryBoilson, AndrewLinertovÁ, RenataRoeyers, HerbertVan der Paelt, SaraSchendel, DianaWarberg, Christine KlosterCramer, SusanneNarzisi, AntonioMuratori, FilippoScattoni, María LuisaMoilanen, IrmaYliherva, AnneliSaemundsen, EvaldJonsdottir, Sigridur LoaEfrim-Budisteanu, MagdalenaArghir, AuroraPapuc, Sorina MihaelaVicente, AstridRasga, CeliaXenia Kafka, JohannaPoustka, LuiseKothgassner, Oswald D.Kawa, RafalPisula, EwaSellers, TraceyPosada de la Paz, ManuelRogé, Bernadette2023-03-17T14:52:53Z2022-112022-11-01T00:00:00Zinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleapplication/pdfhttp://hdl.handle.net/10400.18/8556engAutism. 2022 Nov;26(8):2136-2150. doi: 10.1177/13623613221080318. Epub 2022 Mar 91362-361310.1177/13623613221080318info: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:RCAAP2023-07-20T15:42:38Zoai:repositorio.insa.pt:10400.18/8556Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireopendoar:71602024-03-19T18:43:11.908016Repositório 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 Determinants of satisfaction with the detection process of autism in Europe: Results from the ASDEU study
title Determinants of satisfaction with the detection process of autism in Europe: Results from the ASDEU study
spellingShingle Determinants of satisfaction with the detection process of autism in Europe: Results from the ASDEU study
Guillon, Quentin
Autism
Early Detection
Parents’ Experiences
Satisfaction
Perturbações do Desenvolvimento Infantil e Saúde Mental
title_short Determinants of satisfaction with the detection process of autism in Europe: Results from the ASDEU study
title_full Determinants of satisfaction with the detection process of autism in Europe: Results from the ASDEU study
title_fullStr Determinants of satisfaction with the detection process of autism in Europe: Results from the ASDEU study
title_full_unstemmed Determinants of satisfaction with the detection process of autism in Europe: Results from the ASDEU study
title_sort Determinants of satisfaction with the detection process of autism in Europe: Results from the ASDEU study
author Guillon, Quentin
author_facet Guillon, Quentin
Baduel, Sophie
Bejarano-Martín, Álvaro
Canal-Bedia, Ricardo
MagÁn-Maganto, María
FernÁndez-Álvarez, Clara
Martín-Cilleros, María Victoria
SÁnchez-Gómez, María Cruz
García-Primo, Patricia
Rose-Sweeney, Mary
Boilson, Andrew
LinertovÁ, Renata
Roeyers, Herbert
Van der Paelt, Sara
Schendel, Diana
Warberg, Christine Kloster
Cramer, Susanne
Narzisi, Antonio
Muratori, Filippo
Scattoni, María Luisa
Moilanen, Irma
Yliherva, Anneli
Saemundsen, Evald
Jonsdottir, Sigridur Loa
Efrim-Budisteanu, Magdalena
Arghir, Aurora
Papuc, Sorina Mihaela
Vicente, Astrid
Rasga, Celia
Xenia Kafka, Johanna
Poustka, Luise
Kothgassner, Oswald D.
Kawa, Rafal
Pisula, Ewa
Sellers, Tracey
Posada de la Paz, Manuel
Rogé, Bernadette
author_role author
author2 Baduel, Sophie
Bejarano-Martín, Álvaro
Canal-Bedia, Ricardo
MagÁn-Maganto, María
FernÁndez-Álvarez, Clara
Martín-Cilleros, María Victoria
SÁnchez-Gómez, María Cruz
García-Primo, Patricia
Rose-Sweeney, Mary
Boilson, Andrew
LinertovÁ, Renata
Roeyers, Herbert
Van der Paelt, Sara
Schendel, Diana
Warberg, Christine Kloster
Cramer, Susanne
Narzisi, Antonio
Muratori, Filippo
Scattoni, María Luisa
Moilanen, Irma
Yliherva, Anneli
Saemundsen, Evald
Jonsdottir, Sigridur Loa
Efrim-Budisteanu, Magdalena
Arghir, Aurora
Papuc, Sorina Mihaela
Vicente, Astrid
Rasga, Celia
Xenia Kafka, Johanna
Poustka, Luise
Kothgassner, Oswald D.
Kawa, Rafal
Pisula, Ewa
Sellers, Tracey
Posada de la Paz, Manuel
Rogé, Bernadette
author2_role author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
dc.contributor.none.fl_str_mv Repositório Científico do Instituto Nacional de Saúde
dc.contributor.author.fl_str_mv Guillon, Quentin
Baduel, Sophie
Bejarano-Martín, Álvaro
Canal-Bedia, Ricardo
MagÁn-Maganto, María
FernÁndez-Álvarez, Clara
Martín-Cilleros, María Victoria
SÁnchez-Gómez, María Cruz
García-Primo, Patricia
Rose-Sweeney, Mary
Boilson, Andrew
LinertovÁ, Renata
Roeyers, Herbert
Van der Paelt, Sara
Schendel, Diana
Warberg, Christine Kloster
Cramer, Susanne
Narzisi, Antonio
Muratori, Filippo
Scattoni, María Luisa
Moilanen, Irma
Yliherva, Anneli
Saemundsen, Evald
Jonsdottir, Sigridur Loa
Efrim-Budisteanu, Magdalena
Arghir, Aurora
Papuc, Sorina Mihaela
Vicente, Astrid
Rasga, Celia
Xenia Kafka, Johanna
Poustka, Luise
Kothgassner, Oswald D.
Kawa, Rafal
Pisula, Ewa
Sellers, Tracey
Posada de la Paz, Manuel
Rogé, Bernadette
dc.subject.por.fl_str_mv Autism
Early Detection
Parents’ Experiences
Satisfaction
Perturbações do Desenvolvimento Infantil e Saúde Mental
topic Autism
Early Detection
Parents’ Experiences
Satisfaction
Perturbações do Desenvolvimento Infantil e Saúde Mental
description Professional guidance and support in response to first concerns appears to be an important predictor of the level of satisfaction with the detection process of autism in young children. In this study, we analyzed the views of 1342 family members, including 1278 parents, who completed an online survey form collecting information about their experience and satisfaction with the early detection of autism in their child. Specifically, we were interested in how specific experiences with the detection process relate to the satisfaction with it and whether we could identify important predictors of satisfaction. The detection process is an emotionally charged period for parents, often described as painful, chaotic, and lengthy. A better understanding of their experiences is important to take appropriate action to improve the detection process. In our sample, the level of satisfaction with the detection process varied greatly from one respondent to another. Among the different experiences we considered, whether or not respondents received professional guidance and support in response to first concerns explained most of this variation. We also found that difficulty finding information about detection services, lack of professional guidance and support in response to first concerns, having to find a diagnostic service on one's own, and longer delays between confirmation of concerns and first appointment with a specialist were experiences associated with a greater likelihood of being unsatisfied. The findings of this study highlight the importance of the parent-professional relationship in the detection process and have important practical implications for health administrations to improve the detection process.
publishDate 2022
dc.date.none.fl_str_mv 2022-11
2022-11-01T00:00:00Z
2023-03-17T14:52:53Z
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/10400.18/8556
url http://hdl.handle.net/10400.18/8556
dc.language.iso.fl_str_mv eng
language eng
dc.relation.none.fl_str_mv Autism. 2022 Nov;26(8):2136-2150. doi: 10.1177/13623613221080318. Epub 2022 Mar 9
1362-3613
10.1177/13623613221080318
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
publisher.none.fl_str_mv SAGE Publications
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
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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
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