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Overcoming hurdles to intervention studies with autistic children with profound communication difficulties and their families / A. MCKINNEY in Autism, 25-6 (August 2021)
[article]
Titre : Overcoming hurdles to intervention studies with autistic children with profound communication difficulties and their families Type de document : Texte imprimé et/ou numérique Auteurs : A. MCKINNEY, Auteur ; E. J. WEISBLATT, Auteur ; K. L. HOTSON, Auteur ; Z. BILAL AHMED, Auteur ; C. DIAS, Auteur ; D. BENSHALOM, Auteur ; J. FOSTER, Auteur ; S. MURPHY, Auteur ; S. S. VILLAR, Auteur ; Matthew K. BELMONTE, Auteur Article en page(s) : p.1627-1639 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder/therapy Autistic Disorder/therapy Child Communication Humans Intellectual Disability/therapy Parents autism clinical trial inclusion intellectual disability intervention minimally verbal nonverbal of interest with respect to the research, authorship and/or publication of this article. Index. décimale : PER Périodiques Résumé : Autistic children who speak few or no words or who have an intellectual disability are the most in need of new understandings and treatments, but the most often left out of the research that can bring these benefits. Researchers perceive difficulties around compliance with instructions, testing, challenging behaviours and family stress. Although research with these children can indeed be difficult, their continuing exclusion is unethical and unacceptable. Drawing on our experiences testing a possible treatment for children with profound autism, we provide 10 practical guidelines related to (1) interacting physically, (2) combining play and testing, (3) responding to challenging behaviour, (4) finding suitable tests, (5) relationships with parents, (6) relationships with siblings, (7) involving stakeholders, (8) planning the testing times, (9) the role of the clinical supervisor and (10) recruiting and retaining participants. We hope that these guidelines will prepare and embolden other research teams to work with profoundly autistic children, ending their historical exclusion from research. These guidelines also could be useful for conducting research with children with intellectual disabilities. En ligne : http://dx.doi.org/10.1177/1362361321998916 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=451
in Autism > 25-6 (August 2021) . - p.1627-1639[article] Overcoming hurdles to intervention studies with autistic children with profound communication difficulties and their families [Texte imprimé et/ou numérique] / A. MCKINNEY, Auteur ; E. J. WEISBLATT, Auteur ; K. L. HOTSON, Auteur ; Z. BILAL AHMED, Auteur ; C. DIAS, Auteur ; D. BENSHALOM, Auteur ; J. FOSTER, Auteur ; S. MURPHY, Auteur ; S. S. VILLAR, Auteur ; Matthew K. BELMONTE, Auteur . - p.1627-1639.
Langues : Anglais (eng)
in Autism > 25-6 (August 2021) . - p.1627-1639
Mots-clés : Autism Spectrum Disorder/therapy Autistic Disorder/therapy Child Communication Humans Intellectual Disability/therapy Parents autism clinical trial inclusion intellectual disability intervention minimally verbal nonverbal of interest with respect to the research, authorship and/or publication of this article. Index. décimale : PER Périodiques Résumé : Autistic children who speak few or no words or who have an intellectual disability are the most in need of new understandings and treatments, but the most often left out of the research that can bring these benefits. Researchers perceive difficulties around compliance with instructions, testing, challenging behaviours and family stress. Although research with these children can indeed be difficult, their continuing exclusion is unethical and unacceptable. Drawing on our experiences testing a possible treatment for children with profound autism, we provide 10 practical guidelines related to (1) interacting physically, (2) combining play and testing, (3) responding to challenging behaviour, (4) finding suitable tests, (5) relationships with parents, (6) relationships with siblings, (7) involving stakeholders, (8) planning the testing times, (9) the role of the clinical supervisor and (10) recruiting and retaining participants. We hope that these guidelines will prepare and embolden other research teams to work with profoundly autistic children, ending their historical exclusion from research. These guidelines also could be useful for conducting research with children with intellectual disabilities. En ligne : http://dx.doi.org/10.1177/1362361321998916 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=451 Overcoming hurdles to intervention studies with autistic children with profound communication difficulties and their families / Ailbhe MCKINNEY in Autism, 26-6 (August 2022)
[article]
Titre : Overcoming hurdles to intervention studies with autistic children with profound communication difficulties and their families Type de document : Texte imprimé et/ou numérique Auteurs : Ailbhe MCKINNEY, Auteur ; Emma Jl WEISBLATT, Auteur ; Kathryn L. HOTSON, Auteur ; Zahra BILAL AHMED, Auteur ; Claudia DIAS, Auteur ; Dorit BENSHALOM, Auteur ; Juliet FOSTER, Auteur ; Suzanne MURPHY, Auteur ; Sofia S. VILLAR, Auteur ; Matthew K. BELMONTE, Auteur Article en page(s) : p.1627-1639 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder/therapy Autistic Disorder/therapy Child Communication Humans Intellectual Disability/therapy Parents autism clinical trial inclusion intellectual disability intervention minimally verbal nonverbal conflicts of interest with respect to the research, authorship and/or publication of this article. Index. décimale : PER Périodiques Résumé : Autistic children who speak few or no words or who have an intellectual disability are the most in need of new understandings and treatments, but the most often left out of the research that can bring these benefits. Researchers perceive difficulties around compliance with instructions, testing, challenging behaviours and family stress. Although research with these children can indeed be difficult, their continuing exclusion is unethical and unacceptable. Drawing on our experiences testing a possible treatment for children with profound autism, we provide 10 practical guidelines related to (1) interacting physically, (2) combining play and testing, (3) responding to challenging behaviour, (4) finding suitable tests, (5) relationships with parents, (6) relationships with siblings, (7) involving stakeholders, (8) planning the testing times, (9) the role of the clinical supervisor and (10) recruiting and retaining participants. We hope that these guidelines will prepare and embolden other research teams to work with profoundly autistic children, ending their historical exclusion from research. These guidelines also could be useful for conducting research with children with intellectual disabilities. En ligne : http://dx.doi.org/10.1177/1362361321998916 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=484
in Autism > 26-6 (August 2022) . - p.1627-1639[article] Overcoming hurdles to intervention studies with autistic children with profound communication difficulties and their families [Texte imprimé et/ou numérique] / Ailbhe MCKINNEY, Auteur ; Emma Jl WEISBLATT, Auteur ; Kathryn L. HOTSON, Auteur ; Zahra BILAL AHMED, Auteur ; Claudia DIAS, Auteur ; Dorit BENSHALOM, Auteur ; Juliet FOSTER, Auteur ; Suzanne MURPHY, Auteur ; Sofia S. VILLAR, Auteur ; Matthew K. BELMONTE, Auteur . - p.1627-1639.
Langues : Anglais (eng)
in Autism > 26-6 (August 2022) . - p.1627-1639
Mots-clés : Autism Spectrum Disorder/therapy Autistic Disorder/therapy Child Communication Humans Intellectual Disability/therapy Parents autism clinical trial inclusion intellectual disability intervention minimally verbal nonverbal conflicts of interest with respect to the research, authorship and/or publication of this article. Index. décimale : PER Périodiques Résumé : Autistic children who speak few or no words or who have an intellectual disability are the most in need of new understandings and treatments, but the most often left out of the research that can bring these benefits. Researchers perceive difficulties around compliance with instructions, testing, challenging behaviours and family stress. Although research with these children can indeed be difficult, their continuing exclusion is unethical and unacceptable. Drawing on our experiences testing a possible treatment for children with profound autism, we provide 10 practical guidelines related to (1) interacting physically, (2) combining play and testing, (3) responding to challenging behaviour, (4) finding suitable tests, (5) relationships with parents, (6) relationships with siblings, (7) involving stakeholders, (8) planning the testing times, (9) the role of the clinical supervisor and (10) recruiting and retaining participants. We hope that these guidelines will prepare and embolden other research teams to work with profoundly autistic children, ending their historical exclusion from research. These guidelines also could be useful for conducting research with children with intellectual disabilities. En ligne : http://dx.doi.org/10.1177/1362361321998916 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=484 Stakeholder informed development of the Emotion Awareness and Skills Enhancement team-based program (EASE-Teams) / Kelly B. BECK in Autism, 26-3 (April 2022)
[article]
Titre : Stakeholder informed development of the Emotion Awareness and Skills Enhancement team-based program (EASE-Teams) Type de document : Texte imprimé et/ou numérique Auteurs : Kelly B. BECK, Auteur ; Jessie B. NORTHRUP, Auteur ; Kaitlyn E. BREITENFELDT, Auteur ; Shannon PORTON, Auteur ; Taylor N. DAY, Auteur ; Kristen T. MACKENZIE, Auteur ; Caitlin M. CONNER, Auteur ; Carla A. MAZEFSKY, Auteur Article en page(s) : p.586-600 Langues : Anglais (eng) Mots-clés : Adolescent Adult Aged Autism Spectrum Disorder/psychology/therapy Autistic Disorder/psychology/therapy Caregivers Child Emotions Humans Intellectual Disability/therapy Young Adult autism spectrum disorders emotion regulation family functioning and support interventions?psychosocial/behavioral mindfulness Index. décimale : PER Périodiques Résumé : Emotion dysregulation (ED) impacts mental health symptoms and well-being in autistic individuals. In prior work, we developed the Emotion Awareness and Skills Enhancement (EASE) to improve emotion dysregulation with autistic adolescents (aged 12-17). The study team partnered with autistic individuals, their caregivers, and expert clinicians to adapt EASE for autistic adolescents and adults with co-occurring intellectual disability and autistic elementary-aged children, groups that often benefit from caregiver support in treatment. In three phases, we (1) gathered caregiver and expert feedback to adapt the original EASE program for autistic adults with intellectual disability, (2) revised the treatment after using it with six autistic adults with intellectual disability, and (3) tested the newly developed caregiver-client team-based treatment, called EASE-Teams, in a small group of 10 autistic individuals with and without intellectual disability (aged 7-25). Families found EASE-Teams to be acceptable and helpful. We found improvements in emotion dysregulation and mental health symptoms for autistic participants. Caregivers reported less stress from their child's dysregulation after participating. These results show that EASE-Teams can be appropriate for different developmental and cognitive needs. Future studies will need to test the benefits of the treatment in community clinics. En ligne : https://dx.doi.org/10.1177/13623613211061936 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=473
in Autism > 26-3 (April 2022) . - p.586-600[article] Stakeholder informed development of the Emotion Awareness and Skills Enhancement team-based program (EASE-Teams) [Texte imprimé et/ou numérique] / Kelly B. BECK, Auteur ; Jessie B. NORTHRUP, Auteur ; Kaitlyn E. BREITENFELDT, Auteur ; Shannon PORTON, Auteur ; Taylor N. DAY, Auteur ; Kristen T. MACKENZIE, Auteur ; Caitlin M. CONNER, Auteur ; Carla A. MAZEFSKY, Auteur . - p.586-600.
Langues : Anglais (eng)
in Autism > 26-3 (April 2022) . - p.586-600
Mots-clés : Adolescent Adult Aged Autism Spectrum Disorder/psychology/therapy Autistic Disorder/psychology/therapy Caregivers Child Emotions Humans Intellectual Disability/therapy Young Adult autism spectrum disorders emotion regulation family functioning and support interventions?psychosocial/behavioral mindfulness Index. décimale : PER Périodiques Résumé : Emotion dysregulation (ED) impacts mental health symptoms and well-being in autistic individuals. In prior work, we developed the Emotion Awareness and Skills Enhancement (EASE) to improve emotion dysregulation with autistic adolescents (aged 12-17). The study team partnered with autistic individuals, their caregivers, and expert clinicians to adapt EASE for autistic adolescents and adults with co-occurring intellectual disability and autistic elementary-aged children, groups that often benefit from caregiver support in treatment. In three phases, we (1) gathered caregiver and expert feedback to adapt the original EASE program for autistic adults with intellectual disability, (2) revised the treatment after using it with six autistic adults with intellectual disability, and (3) tested the newly developed caregiver-client team-based treatment, called EASE-Teams, in a small group of 10 autistic individuals with and without intellectual disability (aged 7-25). Families found EASE-Teams to be acceptable and helpful. We found improvements in emotion dysregulation and mental health symptoms for autistic participants. Caregivers reported less stress from their child's dysregulation after participating. These results show that EASE-Teams can be appropriate for different developmental and cognitive needs. Future studies will need to test the benefits of the treatment in community clinics. En ligne : https://dx.doi.org/10.1177/13623613211061936 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=473