Determinants of satisfaction with the detection process of autism in Europe: Results from the ASDEU study
Autor(a) principal: | |
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Data de Publicação: | 2022 |
Outros Autores: | , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
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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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 |
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Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação |
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RCAAP |
institution |
RCAAP |
reponame_str |
Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
collection |
Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
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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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1799132177583046656 |