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Parent Perspectives Towards Genetic and Epigenetic Testing for Autism Spectrum Disorder / Kayla E. WAGNER in Journal of Autism and Developmental Disorders, 50-9 (September 2020)
[article]
Titre : Parent Perspectives Towards Genetic and Epigenetic Testing for Autism Spectrum Disorder Type de document : Texte imprimé et/ou numérique Auteurs : Kayla E. WAGNER, Auteur ; Jennifer B. MCCORMICK, Auteur ; Sarah BARNS, Auteur ; Molly CARNEY, Auteur ; Frank A. MIDDLETON, Auteur ; Steven D. HICKS, Auteur Article en page(s) : p.3114-3125 Langues : Anglais (eng) Mots-clés : Autism Bioethics Diagnosis Epigenetics Parent perspectives biomarkers in autism spectrum disorder that is assigned to The Research Foundation for the State University of New York, The Penn State Research Foundation and Quadrant Biosciences Inc., and licensed to Quadrant Biosciences Inc. SDH is a paid consultant for Quadrant Biosciences Inc. These conflicts of interest are actively managed by the Penn State College of Medicine. KW and SB are employees of Quadrant Biosciences Inc. Index. décimale : PER Périodiques Résumé : Examining community views on genetic/epigenetic research allows collaborative technology development. Parent perspectives toward genetic/epigenetic testing for autism spectrum disorder (ASD) are not well-studied. Parents of children with ASD (n?=?131), non-ASD developmental delay (n?=?39), and typical development (n?=?74) completed surveys assessing genetic/epigenetic knowledge, genetic/epigenetic concerns, motives for research participation, and attitudes/preferences toward ASD testing. Most parents (96%) were interested in saliva-based molecular testing for ASD. Some had concerns about privacy (14%) and insurance-status (10%). None (0%) doubted scientific evidence behind genetic/epigenetic testing. Most reported familiarity with genetics (88%), but few understood differences from epigenetics (19%). Child developmental status impacted insurance concerns (p?=?0.01). There is broad parent interest in a genetic/epigenetic test for ASD. It will be crucial to carefully consider and address bioethical issues surrounding this sensitive topic while developing such technology. En ligne : http://dx.doi.org/10.1007/s10803-019-03990-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=430
in Journal of Autism and Developmental Disorders > 50-9 (September 2020) . - p.3114-3125[article] Parent Perspectives Towards Genetic and Epigenetic Testing for Autism Spectrum Disorder [Texte imprimé et/ou numérique] / Kayla E. WAGNER, Auteur ; Jennifer B. MCCORMICK, Auteur ; Sarah BARNS, Auteur ; Molly CARNEY, Auteur ; Frank A. MIDDLETON, Auteur ; Steven D. HICKS, Auteur . - p.3114-3125.
Langues : Anglais (eng)
in Journal of Autism and Developmental Disorders > 50-9 (September 2020) . - p.3114-3125
Mots-clés : Autism Bioethics Diagnosis Epigenetics Parent perspectives biomarkers in autism spectrum disorder that is assigned to The Research Foundation for the State University of New York, The Penn State Research Foundation and Quadrant Biosciences Inc., and licensed to Quadrant Biosciences Inc. SDH is a paid consultant for Quadrant Biosciences Inc. These conflicts of interest are actively managed by the Penn State College of Medicine. KW and SB are employees of Quadrant Biosciences Inc. Index. décimale : PER Périodiques Résumé : Examining community views on genetic/epigenetic research allows collaborative technology development. Parent perspectives toward genetic/epigenetic testing for autism spectrum disorder (ASD) are not well-studied. Parents of children with ASD (n?=?131), non-ASD developmental delay (n?=?39), and typical development (n?=?74) completed surveys assessing genetic/epigenetic knowledge, genetic/epigenetic concerns, motives for research participation, and attitudes/preferences toward ASD testing. Most parents (96%) were interested in saliva-based molecular testing for ASD. Some had concerns about privacy (14%) and insurance-status (10%). None (0%) doubted scientific evidence behind genetic/epigenetic testing. Most reported familiarity with genetics (88%), but few understood differences from epigenetics (19%). Child developmental status impacted insurance concerns (p?=?0.01). There is broad parent interest in a genetic/epigenetic test for ASD. It will be crucial to carefully consider and address bioethical issues surrounding this sensitive topic while developing such technology. En ligne : http://dx.doi.org/10.1007/s10803-019-03990-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=430 Brief Report: Parent Perspectives on Sensory-Based Interventions for Children with Autism Spectrum Disorder / M. PEÑA in Journal of Autism and Developmental Disorders, 51-6 (June 2021)
[article]
Titre : Brief Report: Parent Perspectives on Sensory-Based Interventions for Children with Autism Spectrum Disorder Type de document : Texte imprimé et/ou numérique Auteurs : M. PEÑA, Auteur ; Y. NG, Auteur ; J. RIPAT, Auteur ; Evdokia ANAGNOSTOU, Auteur Article en page(s) : p.2109-2114 Langues : Anglais (eng) Mots-clés : Adult Autism Spectrum Disorder/therapy Child Child, Preschool Female Humans Male Parents/psychology Patient Acceptance of Health Care/psychology Sensory Art Therapies/methods/psychology Surveys and Questionnaires Asd Autism Challenging behaviours Parent perspectives Sensory Sensory Processing Sensory-Based interventions Index. décimale : PER Périodiques Résumé : Sensory-Based Interventions (SBIs) are often recommended to enable function/participation in children with ASD. Still, there are limited studies to evaluate their effectiveness. Acceptability studies are an important step towards establishing effective interventions. We examined parents' perceptions of the uptake and acceptability of such interventions. An online survey was sent to 399 families; response rate was 39%. The most frequently therapist-recommended interventions were trampoline (54.6%), massage (47.8%), and oral-motor tools (43.8%). Highest use was reported for massage (96.3%), trampoline (89.2%) and joint compressions and brushing (89.2%). The majority of parents viewed these interventions to be very important /important, (74.8%) but barriers to their use were identified. High acceptability of SBIs was reported by parents of children with ASD. En ligne : http://dx.doi.org/10.1007/s10803-020-04644-8 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=452
in Journal of Autism and Developmental Disorders > 51-6 (June 2021) . - p.2109-2114[article] Brief Report: Parent Perspectives on Sensory-Based Interventions for Children with Autism Spectrum Disorder [Texte imprimé et/ou numérique] / M. PEÑA, Auteur ; Y. NG, Auteur ; J. RIPAT, Auteur ; Evdokia ANAGNOSTOU, Auteur . - p.2109-2114.
Langues : Anglais (eng)
in Journal of Autism and Developmental Disorders > 51-6 (June 2021) . - p.2109-2114
Mots-clés : Adult Autism Spectrum Disorder/therapy Child Child, Preschool Female Humans Male Parents/psychology Patient Acceptance of Health Care/psychology Sensory Art Therapies/methods/psychology Surveys and Questionnaires Asd Autism Challenging behaviours Parent perspectives Sensory Sensory Processing Sensory-Based interventions Index. décimale : PER Périodiques Résumé : Sensory-Based Interventions (SBIs) are often recommended to enable function/participation in children with ASD. Still, there are limited studies to evaluate their effectiveness. Acceptability studies are an important step towards establishing effective interventions. We examined parents' perceptions of the uptake and acceptability of such interventions. An online survey was sent to 399 families; response rate was 39%. The most frequently therapist-recommended interventions were trampoline (54.6%), massage (47.8%), and oral-motor tools (43.8%). Highest use was reported for massage (96.3%), trampoline (89.2%) and joint compressions and brushing (89.2%). The majority of parents viewed these interventions to be very important /important, (74.8%) but barriers to their use were identified. High acceptability of SBIs was reported by parents of children with ASD. En ligne : http://dx.doi.org/10.1007/s10803-020-04644-8 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=452 In Search of Culturally Appropriate Autism Interventions: Perspectives of Latino Caregivers / M. DUBAY in Journal of Autism and Developmental Disorders, 48-5 (May 2018)
[article]
Titre : In Search of Culturally Appropriate Autism Interventions: Perspectives of Latino Caregivers Type de document : Texte imprimé et/ou numérique Auteurs : M. DUBAY, Auteur ; Linda R. WATSON, Auteur ; W. ZHANG, Auteur Article en page(s) : p.1623-1639 Langues : Anglais (eng) Mots-clés : Cultural adaptation Evidence-based practices Latino Parent perspectives Index. décimale : PER Périodiques Résumé : Most evidence-based autism spectrum disorder (ASD) interventions are tested with primarily White, mid-upper class, English-speaking populations, despite the increase in Latino children with ASD in early intervention programs throughout the United States. Unfortunately, interventions that are incongruent with a target population's culture may be relatively ineffective. This mixed-methods study explored how culturally appropriate, feasible, and acceptable Latino caregivers perceived intervention models, strategies, and targets. Survey data were compared for 28 Latino and 27 non-Latino White parents of young children with ASD. Further, 20 Latino caregivers participated in focus groups to describe their challenges, perspectives and preferences for intervention strategies and models, and unmet needs from providers. These findings underscore the need for culturally modified interventions for Latino children and families. En ligne : http://dx.doi.org/10.1007/s10803-017-3394-8 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=355
in Journal of Autism and Developmental Disorders > 48-5 (May 2018) . - p.1623-1639[article] In Search of Culturally Appropriate Autism Interventions: Perspectives of Latino Caregivers [Texte imprimé et/ou numérique] / M. DUBAY, Auteur ; Linda R. WATSON, Auteur ; W. ZHANG, Auteur . - p.1623-1639.
Langues : Anglais (eng)
in Journal of Autism and Developmental Disorders > 48-5 (May 2018) . - p.1623-1639
Mots-clés : Cultural adaptation Evidence-based practices Latino Parent perspectives Index. décimale : PER Périodiques Résumé : Most evidence-based autism spectrum disorder (ASD) interventions are tested with primarily White, mid-upper class, English-speaking populations, despite the increase in Latino children with ASD in early intervention programs throughout the United States. Unfortunately, interventions that are incongruent with a target population's culture may be relatively ineffective. This mixed-methods study explored how culturally appropriate, feasible, and acceptable Latino caregivers perceived intervention models, strategies, and targets. Survey data were compared for 28 Latino and 27 non-Latino White parents of young children with ASD. Further, 20 Latino caregivers participated in focus groups to describe their challenges, perspectives and preferences for intervention strategies and models, and unmet needs from providers. These findings underscore the need for culturally modified interventions for Latino children and families. En ligne : http://dx.doi.org/10.1007/s10803-017-3394-8 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=355 Parent reported barriers and facilitators to support services for autistic children in Aotearoa New Zealand / Carla WALLACE-WATKIN in Autism, 27-8 (November 2023)
[article]
Titre : Parent reported barriers and facilitators to support services for autistic children in Aotearoa New Zealand Type de document : Texte imprimé et/ou numérique Auteurs : Carla WALLACE-WATKIN, Auteur ; Jeff SIGAFOOS, Auteur ; Lisa WOODS, Auteur ; Hannah WADDINGTON, Auteur Article en page(s) : p.2542-2554 Mots-clés : barriers facilitators parent perspectives support services New Zealand Index. décimale : PER Périodiques Résumé : We surveyed New Zealand parents of autistic children to identify their perceived barriers and facilitators to accessing support services, including the influence of a family?s level of financial resourcing. A total of 173 completed surveys were analysed. Service pathway factors were the greatest barrier experienced by participants, whereas facilitators related to providers tended to be most helpful. Lower family income was associated with a higher number of reported barriers. Both lower family income and having a child who identified their gender as non-binary were predictive of rating the extent of barriers higher. Parents of younger or of non-speaking autistic children on average reported a greater number of facilitators. Implications of these results for support service delivery and potential areas for future research are discussed.Lay abstractParents might have problems in getting support services for their autistic child due to certain barriers. However, there might also be things that can ease or facilitate parents' access to support services. In this study, New Zealand parents were asked about their experiences in getting support services for their autistic child. We also looked at differences in reported barriers and facilitators based on several demographic factors with a focus on family level of financial resourcing. A total of 173 parents completed a survey. The results suggested that parents experienced several barriers, particularly related to service pathways. Facilitators were also experienced, predominantly related to providers. Financial resourcing predicted the number of parent-reported barriers. Both lower level of family financial resourcing and having a non-binary child predicted parents' rating of the extent of barriers. Child age and level of speech were predictors for reports of experiencing a higher number of facilitators, with parents of younger children or of non-speaking autistic children reporting a greater number of facilitators. We discuss how these results may be useful to support service delivery and identify areas for future research. En ligne : http://dx.doi.org/10.1177/13623613231168240 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=514
in Autism > 27-8 (November 2023) . - p.2542-2554[article] Parent reported barriers and facilitators to support services for autistic children in Aotearoa New Zealand [Texte imprimé et/ou numérique] / Carla WALLACE-WATKIN, Auteur ; Jeff SIGAFOOS, Auteur ; Lisa WOODS, Auteur ; Hannah WADDINGTON, Auteur . - p.2542-2554.
in Autism > 27-8 (November 2023) . - p.2542-2554
Mots-clés : barriers facilitators parent perspectives support services New Zealand Index. décimale : PER Périodiques Résumé : We surveyed New Zealand parents of autistic children to identify their perceived barriers and facilitators to accessing support services, including the influence of a family?s level of financial resourcing. A total of 173 completed surveys were analysed. Service pathway factors were the greatest barrier experienced by participants, whereas facilitators related to providers tended to be most helpful. Lower family income was associated with a higher number of reported barriers. Both lower family income and having a child who identified their gender as non-binary were predictive of rating the extent of barriers higher. Parents of younger or of non-speaking autistic children on average reported a greater number of facilitators. Implications of these results for support service delivery and potential areas for future research are discussed.Lay abstractParents might have problems in getting support services for their autistic child due to certain barriers. However, there might also be things that can ease or facilitate parents' access to support services. In this study, New Zealand parents were asked about their experiences in getting support services for their autistic child. We also looked at differences in reported barriers and facilitators based on several demographic factors with a focus on family level of financial resourcing. A total of 173 parents completed a survey. The results suggested that parents experienced several barriers, particularly related to service pathways. Facilitators were also experienced, predominantly related to providers. Financial resourcing predicted the number of parent-reported barriers. Both lower level of family financial resourcing and having a non-binary child predicted parents' rating of the extent of barriers. Child age and level of speech were predictors for reports of experiencing a higher number of facilitators, with parents of younger children or of non-speaking autistic children reporting a greater number of facilitators. We discuss how these results may be useful to support service delivery and identify areas for future research. En ligne : http://dx.doi.org/10.1177/13623613231168240 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=514 Early Intervention Delivery Methods for New Zealand Children with Autism: Current Practices Versus Parental Preferences / C. WALLACE-WATKIN in Journal of Autism and Developmental Disorders, 51-9 (September 2021)
[article]
Titre : Early Intervention Delivery Methods for New Zealand Children with Autism: Current Practices Versus Parental Preferences Type de document : Texte imprimé et/ou numérique Auteurs : C. WALLACE-WATKIN, Auteur ; Andrew J. O. WHITEHOUSE, Auteur ; H. WADDINGTON, Auteur Article en page(s) : p.3199-3211 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder/therapy Autistic Disorder Child Early Intervention, Educational Humans New Zealand Parents Autism spectrum disorder (ASD) Delivery methods Early intervention Parent perspectives Index. décimale : PER Périodiques Résumé : Little is known about parent preferences regarding delivery methods of early interventions. This research examined, through parent report, the current and preferred delivery methods of seven common educational early interventions accessed by New Zealand children with autism spectrum disorder. Responses from 63 eligible participants were collected via an online questionnaire. Results suggested that four of the seven early intervention services were predominantly delivered through some form of professional advice to parents. Participants who were receiving at least one privately funded service were more likely to have at least one service delivered directly to their child. Parents' most preferred delivery method for all early intervention services, except parent education programs, involved a professional working directly with their child. En ligne : http://dx.doi.org/10.1007/s10803-020-04777-w Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=453
in Journal of Autism and Developmental Disorders > 51-9 (September 2021) . - p.3199-3211[article] Early Intervention Delivery Methods for New Zealand Children with Autism: Current Practices Versus Parental Preferences [Texte imprimé et/ou numérique] / C. WALLACE-WATKIN, Auteur ; Andrew J. O. WHITEHOUSE, Auteur ; H. WADDINGTON, Auteur . - p.3199-3211.
Langues : Anglais (eng)
in Journal of Autism and Developmental Disorders > 51-9 (September 2021) . - p.3199-3211
Mots-clés : Autism Spectrum Disorder/therapy Autistic Disorder Child Early Intervention, Educational Humans New Zealand Parents Autism spectrum disorder (ASD) Delivery methods Early intervention Parent perspectives Index. décimale : PER Périodiques Résumé : Little is known about parent preferences regarding delivery methods of early interventions. This research examined, through parent report, the current and preferred delivery methods of seven common educational early interventions accessed by New Zealand children with autism spectrum disorder. Responses from 63 eligible participants were collected via an online questionnaire. Results suggested that four of the seven early intervention services were predominantly delivered through some form of professional advice to parents. Participants who were receiving at least one privately funded service were more likely to have at least one service delivered directly to their child. Parents' most preferred delivery method for all early intervention services, except parent education programs, involved a professional working directly with their child. En ligne : http://dx.doi.org/10.1007/s10803-020-04777-w Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=453 Parents’ Perceptions of the Usefulness of Chromosomal Microarray Analysis for Children with Autism Spectrum Disorders / Marian REIFF in Journal of Autism and Developmental Disorders, 45-10 (October 2015)
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