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 et/ou numérique 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 et/ou numérique] / 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

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 et/ou numérique 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 et/ou numérique] / 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

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)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 52-5 (May 2022) . - p.2300-2313 Titre : The Digital Divide in Technologies for Autism: Feasibility Considerations for Low- and Middle-Income Countries Type de document : Texte imprimé et/ou numérique Auteurs : Aubrey J. KUMM, Auteur ; Marisa VILJOEN, Auteur ; Petrus J. DE VRIES, Auteur Article en page(s) : p.2300-2313 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder/therapy  Autistic Disorder/therapy  Covid-19  Developing Countries  Digital Divide  Feasibility Studies  Humans  Pandemics  Technology  Africa  Autism spectrum disorder  Digital disparities  Digital technology  India  Low-resource contexts Index. décimale : PER Périodiques Résumé : Digital technologies have the potential to empower individuals with autism and their families. The COVID-19 pandemic emphasized and accelerated the drive towards technology for information, communication, training, clinical care and research, also in the autism community. However, 95% of individuals with autism live in low- and middle-income countries (LMIC) where access to electricity, internet and the ever-increasing range of digital devices may be highly limited. The World Bank coined the term 'the digital divide' to describe the disparities in access to digital technologies between high-income and LMIC contexts. Here we evaluated the feasibility of six emerging technologies for autism spectrum disorders, and reflected on key considerations for implementation in LMIC contexts to ensure that we do not inadvertently widen the pre-existing digital divide. En ligne : http://dx.doi.org/10.1007/s10803-021-05084-8 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=476 [article] The Digital Divide in Technologies for Autism: Feasibility Considerations for Low- and Middle-Income Countries [Texte imprimé et/ou numérique] / Aubrey J. KUMM, Auteur ; Marisa VILJOEN, Auteur ; Petrus J. DE VRIES, Auteur . - p.2300-2313. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 52-5 (May 2022) . - p.2300-2313 Mots-clés : Autism Spectrum Disorder/therapy  Autistic Disorder/therapy  Covid-19  Developing Countries  Digital Divide  Feasibility Studies  Humans  Pandemics  Technology  Africa  Autism spectrum disorder  Digital disparities  Digital technology  India  Low-resource contexts Index. décimale : PER Périodiques Résumé : Digital technologies have the potential to empower individuals with autism and their families. The COVID-19 pandemic emphasized and accelerated the drive towards technology for information, communication, training, clinical care and research, also in the autism community. However, 95% of individuals with autism live in low- and middle-income countries (LMIC) where access to electricity, internet and the ever-increasing range of digital devices may be highly limited. The World Bank coined the term 'the digital divide' to describe the disparities in access to digital technologies between high-income and LMIC contexts. Here we evaluated the feasibility of six emerging technologies for autism spectrum disorders, and reflected on key considerations for implementation in LMIC contexts to ensure that we do not inadvertently widen the pre-existing digital divide. En ligne : http://dx.doi.org/10.1007/s10803-021-05084-8 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=476

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