Adapting an early autism caregiver coaching intervention for telehealth delivery in low-resource settings: A South African study of the 'what' and the 'why' / Marisa VILJOEN in Autism, 29-5 (May 2025)  

Public ISBD [article]  inAutism > 29-5 (May 2025) . - p.1246-1262 Titre : Adapting an early autism caregiver coaching intervention for telehealth delivery in low-resource settings: A South African study of the 'what' and the 'why' Type de document : texte imprimé Auteurs : Marisa VILJOEN, Auteur ; Noleen SERIS, Auteur ; Nokuthula SHABALALA, Auteur ; Minkateko NDLOVU, Auteur ; Petrus J. DE VRIES, Auteur ; Lauren FRANZ, Auteur Article en page(s) : p.1246-1262 Langues : Anglais (eng) Mots-clés : adaptation  caregiver coaching  exploration  implementation  Naturalistic Developmental Behavioural Intervention  preparation  sustainment (EPIS) framework  telehealth  The Framework for Modification and Adaptations (FRAME) Index. décimale : PER Périodiques Résumé : The COVID-19 pandemic required in-person interventions to be adapted for remote delivery all over the globe. In South Africa, an in-person cascaded task-sharing naturalistic developmental behavioural intervention was adapted for telehealth delivery in a low-resource context. Here we describe the adaptations made (the 'what') and reasons for adaptations (the 'why'). The Framework for Modification and Adaptations (FRAME) was used to document the 'what', and the Exploration, Preparation, Implementation, Sustainment (EPIS) framework to describe the 'why'. Systematic member-checking ensured robustness of results. The 'what' included 10 adaptations: selecting WhatsApp as delivery platform, developing images with simple text to communicate intervention concepts, modifying session structure for hybrid delivery, including a caregiver self-reflection checklist, utilizing online practitioner training, supervision, assessment and consent procedures, developing session recording procedures, distributing session materials electronically, and developing caregiver-child interaction recording and uploading protocols. The 'why' included three outer contextual factors (the digital divide, WhatsApp security/privacy policy, and COVID-19 restrictions), three inner contextual factors (characteristics of caregivers and practitioners, ethics board guidance, and school leadership and organizational characteristics) and one innovation factor (support from intervention co-developers). Adaptations were made in response to unchangeable outer contextual factors and through identification of malleable inner contextual factors.Lay abstract We were busy with an early autism caregiver-coaching programme in South Africa, when COVID-19 stopped all in-person work. We changed the programme so it could be done using computers and/or phones. Here, we describe programme changes (which we call the 'what') and the reasons for those changes (which we call the 'why'). We used a tool called the Framework for Modification and Adaptations (FRAME) to describe the 'what', and the Exploration, Preparation, Implementation, Sustainment (EPIS) framework to describe the 'why' of our programme changes. The team members who helped make these changes checked that the changes described were correct. We made 10 changes in total: we used WhatsApp to deliver the programme, made simple pictures with words as visual tools for the programme, changed some session activities, changed a self-reflection checklist, provided all activities online, changed the way assessment and consent was done, made a session recording guide, sent things needed for sessions by email and WhatsApp, and made a caregiver-child play recording guide. The reasons for changes (the 'why') were about factors outside schools (the types of phones and data people had, WhatsApp security rules, COVID-19 rules), things inside schools/workplace (about the caregivers and nonspecialists themselves, ethics boards, things about the school itself), and support from people who developed the programme. Changes were made by working with things inside schools/workplace that could change. Identifying what could change helped focus and guide which changes were made to a programme. En ligne : https://dx.doi.org/10.1177/13623613241300774 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=555 [article] Adapting an early autism caregiver coaching intervention for telehealth delivery in low-resource settings: A South African study of the 'what' and the 'why' [texte imprimé] / Marisa VILJOEN, Auteur ; Noleen SERIS, Auteur ; Nokuthula SHABALALA, Auteur ; Minkateko NDLOVU, Auteur ; Petrus J. DE VRIES, Auteur ; Lauren FRANZ, Auteur . - p.1246-1262. Langues : Anglais (eng) in Autism > 29-5 (May 2025) . - p.1246-1262 Mots-clés : adaptation  caregiver coaching  exploration  implementation  Naturalistic Developmental Behavioural Intervention  preparation  sustainment (EPIS) framework  telehealth  The Framework for Modification and Adaptations (FRAME) Index. décimale : PER Périodiques Résumé : The COVID-19 pandemic required in-person interventions to be adapted for remote delivery all over the globe. In South Africa, an in-person cascaded task-sharing naturalistic developmental behavioural intervention was adapted for telehealth delivery in a low-resource context. Here we describe the adaptations made (the 'what') and reasons for adaptations (the 'why'). The Framework for Modification and Adaptations (FRAME) was used to document the 'what', and the Exploration, Preparation, Implementation, Sustainment (EPIS) framework to describe the 'why'. Systematic member-checking ensured robustness of results. The 'what' included 10 adaptations: selecting WhatsApp as delivery platform, developing images with simple text to communicate intervention concepts, modifying session structure for hybrid delivery, including a caregiver self-reflection checklist, utilizing online practitioner training, supervision, assessment and consent procedures, developing session recording procedures, distributing session materials electronically, and developing caregiver-child interaction recording and uploading protocols. The 'why' included three outer contextual factors (the digital divide, WhatsApp security/privacy policy, and COVID-19 restrictions), three inner contextual factors (characteristics of caregivers and practitioners, ethics board guidance, and school leadership and organizational characteristics) and one innovation factor (support from intervention co-developers). Adaptations were made in response to unchangeable outer contextual factors and through identification of malleable inner contextual factors.Lay abstract We were busy with an early autism caregiver-coaching programme in South Africa, when COVID-19 stopped all in-person work. We changed the programme so it could be done using computers and/or phones. Here, we describe programme changes (which we call the 'what') and the reasons for those changes (which we call the 'why'). We used a tool called the Framework for Modification and Adaptations (FRAME) to describe the 'what', and the Exploration, Preparation, Implementation, Sustainment (EPIS) framework to describe the 'why' of our programme changes. The team members who helped make these changes checked that the changes described were correct. We made 10 changes in total: we used WhatsApp to deliver the programme, made simple pictures with words as visual tools for the programme, changed some session activities, changed a self-reflection checklist, provided all activities online, changed the way assessment and consent was done, made a session recording guide, sent things needed for sessions by email and WhatsApp, and made a caregiver-child play recording guide. The reasons for changes (the 'why') were about factors outside schools (the types of phones and data people had, WhatsApp security rules, COVID-19 rules), things inside schools/workplace (about the caregivers and nonspecialists themselves, ethics boards, things about the school itself), and support from people who developed the programme. Changes were made by working with things inside schools/workplace that could change. Identifying what could change helped focus and guide which changes were made to a programme. En ligne : https://dx.doi.org/10.1177/13623613241300774 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=555

An international qualitative study of functioning in autism spectrum disorder using the World Health Organization international classification of functioning, disability and health framework / Soheil 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 Auteurs : Soheil MAHDI, Auteur ; Marisa VILJOEN, Auteur ; Tamara YEE, Auteur ; Melissa SELB, Auteur ; Nidhi SINGHAL, Auteur ; Omar ALMODAYFER, Auteur ; Mats GRANLUND, Auteur ; Petrus 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] / Soheil MAHDI, Auteur ; Marisa VILJOEN, Auteur ; Tamara YEE, Auteur ; Melissa SELB, Auteur ; Nidhi SINGHAL, Auteur ; Omar ALMODAYFER, Auteur ; Mats GRANLUND, Auteur ; Petrus 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 / Marisa 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 Auteurs : Marisa VILJOEN, Auteur ; Soheil MAHDI, Auteur ; David GRIESSEL, Auteur ; Sven BÖLTE, Auteur ; Petrus 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] / Marisa VILJOEN, Auteur ; Soheil MAHDI, Auteur ; David GRIESSEL, Auteur ; Sven BÖLTE, Auteur ; Petrus 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

Parental perspectives of functioning in their children with autism spectrum disorder: A global scoping review / Marisa VILJOEN in Autism, 25-1 (January 2021)  

Public ISBD [article]  inAutism > 25-1 (January 2021) . - p.176-198 Titre : Parental perspectives of functioning in their children with autism spectrum disorder: A global scoping review Type de document : texte imprimé Auteurs : Marisa VILJOEN, Auteur ; Soheil MAHDI, Auteur ; James SHELLY, Auteur ; Petrus J. DE VRIES, Auteur Article en page(s) : p.176-198 Langues : Anglais (eng) Mots-clés : Disability and Health  International Classification of Functioning  autism spectrum disorder  disability  functioning  parental perspectives Index. décimale : PER Périodiques Résumé : No paper to date has summarized parents' views on the functional challenges and/or strengths of their children with autism spectrum disorder. In this review we set out to perform a scoping review aiming to (a) find and compare existing research from around the globe on parental perception of functioning and (b) summarize results from these papers using the International Classification of Functioning Disability and Health-Child and Youth version framework. Since we know that the place and circumstances we live in can have a significant influence on our functioning in daily life, we were specifically interested in comparing perceptions from high-income countries and low-/middle-income countries. Two researchers conducted a comprehensive search of English studies published between 1990 and June 2016. Papers were summarized and key findings were linked to International Classification of Functioning Disability and Health-Child and Youth categories. Thirty-three studies were identified, of which most were conducted in high-income countries (n = 25/33, 76%) with only six studies in low/middle-income countries (n = 6/33, 18%). Two studies compared views from low/middle-income and high-income countries (n = 2/33, 6%). Functional themes from high-income countries included a range across the International Classification of Functioning Disability and Health-Child and Youth framework while functional themes from low-/middle-income countries were mostly focused on environmental factors. It was difficult to directly compare studies from low/middle-income and high-income countries because they investigated and discussed such different parts of functioning. We suggest that future research should use an approach that will allow researchers to directly compare functional categories in order to get a more accurate impression of the impact of context on functioning. En ligne : http://dx.doi.org/10.1177/1362361320950055 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=437 [article] Parental perspectives of functioning in their children with autism spectrum disorder: A global scoping review [texte imprimé] / Marisa VILJOEN, Auteur ; Soheil MAHDI, Auteur ; James SHELLY, Auteur ; Petrus J. DE VRIES, Auteur . - p.176-198. Langues : Anglais (eng) in Autism > 25-1 (January 2021) . - p.176-198 Mots-clés : Disability and Health  International Classification of Functioning  autism spectrum disorder  disability  functioning  parental perspectives Index. décimale : PER Périodiques Résumé : No paper to date has summarized parents' views on the functional challenges and/or strengths of their children with autism spectrum disorder. In this review we set out to perform a scoping review aiming to (a) find and compare existing research from around the globe on parental perception of functioning and (b) summarize results from these papers using the International Classification of Functioning Disability and Health-Child and Youth version framework. Since we know that the place and circumstances we live in can have a significant influence on our functioning in daily life, we were specifically interested in comparing perceptions from high-income countries and low-/middle-income countries. Two researchers conducted a comprehensive search of English studies published between 1990 and June 2016. Papers were summarized and key findings were linked to International Classification of Functioning Disability and Health-Child and Youth categories. Thirty-three studies were identified, of which most were conducted in high-income countries (n = 25/33, 76%) with only six studies in low/middle-income countries (n = 6/33, 18%). Two studies compared views from low/middle-income and high-income countries (n = 2/33, 6%). Functional themes from high-income countries included a range across the International Classification of Functioning Disability and Health-Child and Youth framework while functional themes from low-/middle-income countries were mostly focused on environmental factors. It was difficult to directly compare studies from low/middle-income and high-income countries because they investigated and discussed such different parts of functioning. We suggest that future research should use an approach that will allow researchers to directly compare functional categories in order to get a more accurate impression of the impact of context on functioning. En ligne : http://dx.doi.org/10.1177/1362361320950055 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=437

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 / Lauren 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 Auteurs : Lauren FRANZ, Auteur ; Jill HOWARD, Auteur ; Marisa VILJOEN, Auteur ; Linmarie SIKICH, Auteur ; Tara CHANDRASEKHAR, Auteur ; Scott H KOLLINS, Auteur ; Lawrence LEE, Auteur ; Minkateko NDLOVU, Auteur ; Maura SABATOS-DEVITO, Auteur ; Noleen SERIS, Auteur ; Nokuthula SHABALALA, Auteur ; Marina SPANOS, Auteur ; Petrus J. DE VRIES, Auteur ; Geraldine 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] / Lauren FRANZ, Auteur ; Jill HOWARD, Auteur ; Marisa VILJOEN, Auteur ; Linmarie SIKICH, Auteur ; Tara CHANDRASEKHAR, Auteur ; Scott H KOLLINS, Auteur ; Lawrence LEE, Auteur ; Minkateko NDLOVU, Auteur ; Maura SABATOS-DEVITO, Auteur ; Noleen SERIS, Auteur ; Nokuthula SHABALALA, Auteur ; Marina SPANOS, Auteur ; Petrus J. DE VRIES, Auteur ; Geraldine 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

The Digital Divide in Technologies for Autism: Feasibility Considerations for Low- and Middle-Income Countries / Aubrey J. KUMM in Journal of Autism and Developmental Disorders, 52-5 (May 2022)  

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