An international qualitative study of functioning in autism spectrum disorder using the World Health Organization international classification of functioning, disability and health framework / S. MAHDI in Autism Research, 11-3 (March 2018)  

Public ISBD [article]  inAutism Research > 11-3 (March 2018) . - p.463-475 Titre : An international qualitative study of functioning in autism spectrum disorder using the World Health Organization international classification of functioning, disability and health framework Type de document : Texte imprimé et/ou numérique Auteurs : S. MAHDI, Auteur ; M. VILJOEN, Auteur ; T. YEE, Auteur ; M. SELB, Auteur ; N. SINGHAL, Auteur ; Omar ALMODAYFER, Auteur ; M. GRANLUND, Auteur ; P. J. DE VRIES, Auteur ; Lonnie ZWAIGENBAUM, Auteur ; Sven BÖLTE, Auteur Article en page(s) : p.463-475 Langues : Anglais (eng) Mots-clés : Icf  assessment  autism spectrum disorder  clinical practice  functioning  qualitative study  strength Index. décimale : PER Périodiques Résumé : This is the third in a series of four empirical studies designed to develop International Classification of Functioning, Disability and Health (ICF) Core Sets for Autism Spectrum Disorder (ASD). The present study aimed to describe functioning in ASD (as operationalized by the ICF) derived from the perspectives of diagnosed individuals, family members, and professionals. A qualitative study using focus groups and semi-structured interviews were conducted with 19 stakeholder groups (N = 90) from Canada, India, Saudi Arabia, South Africa, and Sweden. Meaningful concepts from the focus groups and individual interviews were linked to ICF categories using a deductive qualitative approach with standardized linking procedures. The deductive qualitative content analysis yielded meaningful functioning concepts that were linked to 110 ICF categories across all four ICF components. Broad variation of environmental factors and activities and participation categories were identified in this study, while body functions consisted mainly of mental functions. Body structures were sparsely mentioned by the participants. Positive aspects of ASD included honesty, attention to detail, and memory. The experiences provided by international stakeholders support the need to understand individuals with ASD in a broader perspective, extending beyond diagnostic criteria into many areas of functioning and environmental domains. This study is part of a larger systematic effort that will provide the basis to define ICF Core Sets for ASD, from which assessment tools can be generated for use in clinical practice, research, and health care policy making. Autism Res 2018, 11: 463-475. (c) 2017 The Authors Autism Research published by International Society for Autism Research and Wiley Periodicals, Inc. LAY SUMMARY: The study findings support the need to understand the living experiences of individuals with Autism Spectrum Disorder (ASD) from a broader perspective, taking into account many areas of an individual's functioning and environment. The ICF can serve as foundation for exploring these living experiences more extensively by offering tools that enable wide variety of individual difficulties and strengths to be captured along with important environmental influences. As such, these tools can facilitate interventions that meet the needs and goals of the individual. En ligne : http://dx.doi.org/10.1002/aur.1905 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=352 [article] An international qualitative study of functioning in autism spectrum disorder using the World Health Organization international classification of functioning, disability and health framework [Texte imprimé et/ou numérique] / S. MAHDI, Auteur ; M. VILJOEN, Auteur ; T. YEE, Auteur ; M. SELB, Auteur ; N. SINGHAL, Auteur ; Omar ALMODAYFER, Auteur ; M. GRANLUND, Auteur ; P. J. DE VRIES, Auteur ; Lonnie ZWAIGENBAUM, Auteur ; Sven BÖLTE, Auteur . - p.463-475. Langues : Anglais (eng) in Autism Research > 11-3 (March 2018) . - p.463-475 Mots-clés : Icf  assessment  autism spectrum disorder  clinical practice  functioning  qualitative study  strength Index. décimale : PER Périodiques Résumé : This is the third in a series of four empirical studies designed to develop International Classification of Functioning, Disability and Health (ICF) Core Sets for Autism Spectrum Disorder (ASD). The present study aimed to describe functioning in ASD (as operationalized by the ICF) derived from the perspectives of diagnosed individuals, family members, and professionals. A qualitative study using focus groups and semi-structured interviews were conducted with 19 stakeholder groups (N = 90) from Canada, India, Saudi Arabia, South Africa, and Sweden. Meaningful concepts from the focus groups and individual interviews were linked to ICF categories using a deductive qualitative approach with standardized linking procedures. The deductive qualitative content analysis yielded meaningful functioning concepts that were linked to 110 ICF categories across all four ICF components. Broad variation of environmental factors and activities and participation categories were identified in this study, while body functions consisted mainly of mental functions. Body structures were sparsely mentioned by the participants. Positive aspects of ASD included honesty, attention to detail, and memory. The experiences provided by international stakeholders support the need to understand individuals with ASD in a broader perspective, extending beyond diagnostic criteria into many areas of functioning and environmental domains. This study is part of a larger systematic effort that will provide the basis to define ICF Core Sets for ASD, from which assessment tools can be generated for use in clinical practice, research, and health care policy making. Autism Res 2018, 11: 463-475. (c) 2017 The Authors Autism Research published by International Society for Autism Research and Wiley Periodicals, Inc. LAY SUMMARY: The study findings support the need to understand the living experiences of individuals with Autism Spectrum Disorder (ASD) from a broader perspective, taking into account many areas of an individual's functioning and environment. The ICF can serve as foundation for exploring these living experiences more extensively by offering tools that enable wide variety of individual difficulties and strengths to be captured along with important environmental influences. As such, these tools can facilitate interventions that meet the needs and goals of the individual. En ligne : http://dx.doi.org/10.1002/aur.1905 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=352

Parent/caregiver perspectives of functioning in autism spectrum disorders: A comparative study in Sweden and South Africa / M. VILJOEN in Autism, 23-8 (November 2019)  

Public ISBD [article]  inAutism > 23-8 (November 2019) . - p.2112-2130 Titre : Parent/caregiver perspectives of functioning in autism spectrum disorders: A comparative study in Sweden and South Africa Type de document : Texte imprimé et/ou numérique Auteurs : M. VILJOEN, Auteur ; S. MAHDI, Auteur ; D. GRIESSEL, Auteur ; Sven BÖLTE, Auteur ; P. J. DE VRIES, Auteur Article en page(s) : p.2112-2130 Langues : Anglais (eng) Mots-clés : Disability and Health  Icf  International Classification of Functioning  autism spectrum disorder  caregiver  disability  functioning  parent Index. décimale : PER Périodiques Résumé : Functional outcomes in autism spectrum disorder can be highly variable given the heterogeneous nature of autism spectrum disorder and its interaction with environmental factors. We set out to compare parent/caregiver perceptions of functioning in two divergent countries that participated in the International Classification of Functioning Disability and Health (ICF) Core Set for Autism Spectrum Disorder development study. We focused on the frequency and content of items reported, and hypothesized that environmental factors would most frequently be reported as barriers to functioning in low-resource settings. Using frequency and qualitative content analysis, we compared data from South Africa (n = 22) and Sweden (n = 13). Frequency agreement was seen in three activities and participation categories, and one environmental factor. Obvious frequency differences were observed in one environmental factors category, six body functions categories and three activities and participation categories. Only three ICF categories (immediate family, attention functions, products and technology for personal use) differed in content. Contrary to our hypotheses, few differences in perspectives about environmental factors emerged. The universality of our findings supports the global usefulness of the recently developed ICF Core Sets for Autism Spectrum Disorder. We recommend that more comparative studies on autism spectrum disorder and functioning should be conducted, and that similar comparisons in other disorders where Core Sets have been developed may be valuable. En ligne : http://dx.doi.org/10.1177/1362361319829868 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=407 [article] Parent/caregiver perspectives of functioning in autism spectrum disorders: A comparative study in Sweden and South Africa [Texte imprimé et/ou numérique] / M. VILJOEN, Auteur ; S. MAHDI, Auteur ; D. GRIESSEL, Auteur ; Sven BÖLTE, Auteur ; P. J. DE VRIES, Auteur . - p.2112-2130. Langues : Anglais (eng) in Autism > 23-8 (November 2019) . - p.2112-2130 Mots-clés : Disability and Health  Icf  International Classification of Functioning  autism spectrum disorder  caregiver  disability  functioning  parent Index. décimale : PER Périodiques Résumé : Functional outcomes in autism spectrum disorder can be highly variable given the heterogeneous nature of autism spectrum disorder and its interaction with environmental factors. We set out to compare parent/caregiver perceptions of functioning in two divergent countries that participated in the International Classification of Functioning Disability and Health (ICF) Core Set for Autism Spectrum Disorder development study. We focused on the frequency and content of items reported, and hypothesized that environmental factors would most frequently be reported as barriers to functioning in low-resource settings. Using frequency and qualitative content analysis, we compared data from South Africa (n = 22) and Sweden (n = 13). Frequency agreement was seen in three activities and participation categories, and one environmental factor. Obvious frequency differences were observed in one environmental factors category, six body functions categories and three activities and participation categories. Only three ICF categories (immediate family, attention functions, products and technology for personal use) differed in content. Contrary to our hypotheses, few differences in perspectives about environmental factors emerged. The universality of our findings supports the global usefulness of the recently developed ICF Core Sets for Autism Spectrum Disorder. We recommend that more comparative studies on autism spectrum disorder and functioning should be conducted, and that similar comparisons in other disorders where Core Sets have been developed may be valuable. En ligne : http://dx.doi.org/10.1177/1362361319829868 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=407

Pragmatic adaptations of telehealth-delivered caregiver coaching for children with autism in the context of COVID-19: Perspectives from the United States and South Africa / L. FRANZ in Autism, 26-1 (January 2022)  

Public ISBD [article]  inAutism > 26-1 (January 2022) . - p.270-275 Titre : Pragmatic adaptations of telehealth-delivered caregiver coaching for children with autism in the context of COVID-19: Perspectives from the United States and South Africa Type de document : Texte imprimé et/ou numérique Auteurs : L. FRANZ, Auteur ; J. HOWARD, Auteur ; M. VILJOEN, Auteur ; L. SIKICH, Auteur ; Tara CHANDRASEKHAR, Auteur ; S. H. KOLLINS, Auteur ; L. LEE, Auteur ; M. NDLOVU, Auteur ; Maura SABATOS-DEVITO, Auteur ; N. SERIS, Auteur ; N. SHABALALA, Auteur ; M. SPANOS, Auteur ; P. J. DE VRIES, Auteur ; G. DAWSON, Auteur Article en page(s) : p.270-275 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder/therapy  Autistic Disorder  Covid-19  Caregivers  Child  Humans  Mentoring  SARS-CoV-2  South Africa  Telemedicine  United States  adaptation  autism spectrum disorder  caregiver coaching  digital divide  telehealth  Research and Development, Akili Interactive, LabCorp, Inc, Roche Pharmaceutical  Company, and Tris Pharma, is a consultant for Apple, Inc., Gerson Lehrman Group,  Guidepoint, Inc, Axial Ventures, Teva Pharmaceutical, and is CEO of DASIO, LLC. She  has received book royalties from Guilford Press, Oxford University Press, and  Springer Nature Press. Howard reports personal fees from Roche. Index. décimale : PER Périodiques Résumé : COVID-19 caused many autism spectrum disorder caregiver-coaching studies to move to telehealth. Telehealth can increase the diversity of people who take part in research. This matters because most autism spectrum disorder studies have included people who have resources, are White, and live in North America and Europe. When study participants are similar, it is hard to understand which interventions can help different types of people who live in different parts of the world. While telehealth may allow more people to take part in research, it needs to "fit" the local context and consider the "digital divide" because many people around the world have no access to computers and the Internet. This short report describes changes to two research studies that include caregiver coaching based on the Early Start Denver Model in the United States and South Africa. We describe how the local context, including technology and Internet access, guided the telehealth approach. By doing so, we highlight ways to make telehealth available to more people around the world. The pandemic can help us understand how telehealth can "fit" diverse places and support high-quality research. It is important that study changes are tracked and we assess how well the changes work. COVID-19 telehealth changes to caregiver coaching can result in new ways to reach more people around the world. En ligne : http://dx.doi.org/10.1177/13623613211022585 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=451 [article] Pragmatic adaptations of telehealth-delivered caregiver coaching for children with autism in the context of COVID-19: Perspectives from the United States and South Africa [Texte imprimé et/ou numérique] / L. FRANZ, Auteur ; J. HOWARD, Auteur ; M. VILJOEN, Auteur ; L. SIKICH, Auteur ; Tara CHANDRASEKHAR, Auteur ; S. H. KOLLINS, Auteur ; L. LEE, Auteur ; M. NDLOVU, Auteur ; Maura SABATOS-DEVITO, Auteur ; N. SERIS, Auteur ; N. SHABALALA, Auteur ; M. SPANOS, Auteur ; P. J. DE VRIES, Auteur ; G. DAWSON, Auteur . - p.270-275. Langues : Anglais (eng) in Autism > 26-1 (January 2022) . - p.270-275 Mots-clés : Autism Spectrum Disorder/therapy  Autistic Disorder  Covid-19  Caregivers  Child  Humans  Mentoring  SARS-CoV-2  South Africa  Telemedicine  United States  adaptation  autism spectrum disorder  caregiver coaching  digital divide  telehealth  Research and Development, Akili Interactive, LabCorp, Inc, Roche Pharmaceutical  Company, and Tris Pharma, is a consultant for Apple, Inc., Gerson Lehrman Group,  Guidepoint, Inc, Axial Ventures, Teva Pharmaceutical, and is CEO of DASIO, LLC. She  has received book royalties from Guilford Press, Oxford University Press, and  Springer Nature Press. Howard reports personal fees from Roche. Index. décimale : PER Périodiques Résumé : COVID-19 caused many autism spectrum disorder caregiver-coaching studies to move to telehealth. Telehealth can increase the diversity of people who take part in research. This matters because most autism spectrum disorder studies have included people who have resources, are White, and live in North America and Europe. When study participants are similar, it is hard to understand which interventions can help different types of people who live in different parts of the world. While telehealth may allow more people to take part in research, it needs to "fit" the local context and consider the "digital divide" because many people around the world have no access to computers and the Internet. This short report describes changes to two research studies that include caregiver coaching based on the Early Start Denver Model in the United States and South Africa. We describe how the local context, including technology and Internet access, guided the telehealth approach. By doing so, we highlight ways to make telehealth available to more people around the world. The pandemic can help us understand how telehealth can "fit" diverse places and support high-quality research. It is important that study changes are tracked and we assess how well the changes work. COVID-19 telehealth changes to caregiver coaching can result in new ways to reach more people around the world. En ligne : http://dx.doi.org/10.1177/13623613211022585 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=451

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