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

Conducting caregiver focus groups on autism in the context of an international research collaboration: Logistical and methodological lessons learned in South Africa / Jessy GULER in Autism, 27-3 (April 2023)  

Public ISBD [article]  inAutism > 27-3 (April 2023) . - p.751-761 Titre : Conducting caregiver focus groups on autism in the context of an international research collaboration: Logistical and methodological lessons learned in South Africa Type de document : texte imprimé Auteurs : Jessy GULER, Auteur ; Kearsley A. STEWART, Auteur ; Petrus J. DE VRIES, Auteur ; Noleen SERIS, Auteur ; Nokuthula SHABALALA, Auteur ; Lauren FRANZ, Auteur Article en page(s) : p.751-761 Langues : Anglais (eng) Mots-clés : autism spectrum disorders,caregivers,focus group discussions,logistical challenges,qualitative research,research ethics,research methods Index. décimale : PER Périodiques Résumé : Most autism research has been conducted in high-income countries, with participants typically from White, upper-middle-income families. Given the disparities experienced by autistic individuals living in underserved communities globally, there is a critical need for research to include individuals from culturally, linguistically, socioeconomically, and geographically diverse backgrounds to understand their unique needs. Qualitative research has the potential to describe the ''lived experience'' of families historically underrepresented in the autism literature. Here we describe the logistical and methodological challenges of conducting focus group discussions with 22 caregivers of young autistic children living in Cape Town, South Africa. Logistical challenges included (1) recruitment, (2) response rate, and (3) resource access. Methodological challenges included (1) participant background and experiences, (2) interpersonal dynamics, and (3) research ethics. We present recommendations based on lessons learned to reduce these challenges and improve rigorous qualitative research practices in similar low-resource contexts.Lay abstractMost of the autism research to date has been conducted in high-income countries, with children and families typically from White, upper-middle-income backgrounds. However, we know there are significant inequalities that exist which influence how autistic individuals from diverse, underserved communities can access services they need. As many of these individuals have not been included in the majority of autism research to date, there is much we do not know about these individuals' life experiences, which are critically needed to better inform the development and implementation of care for families from historically underrepresented groups. In this article, we describe the research process we took to conduct focus group discussions with 22 caregivers of young autistic children living in Cape Town, South Africa. We specifically describe the lessons we learned in implementing these focus groups and provide recommendations aimed at how to best reduce logistical and methodological challenges moving forward to improve research conducted in similar low-resource contexts. En ligne : https://doi.org/10.1177/13623613221117012 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499 [article] Conducting caregiver focus groups on autism in the context of an international research collaboration: Logistical and methodological lessons learned in South Africa [texte imprimé] / Jessy GULER, Auteur ; Kearsley A. STEWART, Auteur ; Petrus J. DE VRIES, Auteur ; Noleen SERIS, Auteur ; Nokuthula SHABALALA, Auteur ; Lauren FRANZ, Auteur . - p.751-761. Langues : Anglais (eng) in Autism > 27-3 (April 2023) . - p.751-761 Mots-clés : autism spectrum disorders,caregivers,focus group discussions,logistical challenges,qualitative research,research ethics,research methods Index. décimale : PER Périodiques Résumé : Most autism research has been conducted in high-income countries, with participants typically from White, upper-middle-income families. Given the disparities experienced by autistic individuals living in underserved communities globally, there is a critical need for research to include individuals from culturally, linguistically, socioeconomically, and geographically diverse backgrounds to understand their unique needs. Qualitative research has the potential to describe the ''lived experience'' of families historically underrepresented in the autism literature. Here we describe the logistical and methodological challenges of conducting focus group discussions with 22 caregivers of young autistic children living in Cape Town, South Africa. Logistical challenges included (1) recruitment, (2) response rate, and (3) resource access. Methodological challenges included (1) participant background and experiences, (2) interpersonal dynamics, and (3) research ethics. We present recommendations based on lessons learned to reduce these challenges and improve rigorous qualitative research practices in similar low-resource contexts.Lay abstractMost of the autism research to date has been conducted in high-income countries, with children and families typically from White, upper-middle-income backgrounds. However, we know there are significant inequalities that exist which influence how autistic individuals from diverse, underserved communities can access services they need. As many of these individuals have not been included in the majority of autism research to date, there is much we do not know about these individuals' life experiences, which are critically needed to better inform the development and implementation of care for families from historically underrepresented groups. In this article, we describe the research process we took to conduct focus group discussions with 22 caregivers of young autistic children living in Cape Town, South Africa. We specifically describe the lessons we learned in implementing these focus groups and provide recommendations aimed at how to best reduce logistical and methodological challenges moving forward to improve research conducted in similar low-resource contexts. En ligne : https://doi.org/10.1177/13623613221117012 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499

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 importance of context in early autism intervention: A qualitative South African study / Jessy GULER in Autism, 22-8 (November 2018)  

Public ISBD [article]  inAutism > 22-8 (November 2018) . - p.1005-1017 Titre : The importance of context in early autism intervention: A qualitative South African study Type de document : texte imprimé Auteurs : Jessy GULER, Auteur ; Petrus J. DE VRIES, Auteur ; Noleen SERIS, Auteur ; Nokuthula SHABALALA, Auteur ; Lauren FRANZ, Auteur Article en page(s) : p.1005-1017 Langues : Anglais (eng) Mots-clés : South Africa  autism spectrum disorder  caregivers  contextual factors  early intervention  focus group  low- and middle-income country  qualitative methods Index. décimale : PER Périodiques Résumé : The majority of individuals with autism spectrum disorder live in low- and middle-income countries and receive little or no services from health or social care systems. The development and validation of autism spectrum disorder interventions has almost exclusively occurred in high-income countries, leaving many unanswered questions regarding what contextual factors would need to be considered to ensure the effectiveness of interventions in low- and middle-income countries. This study qualitatively explored contextual factors relevant to the adaptation of a caregiver-mediated early autism spectrum disorder intervention in a low-resource South African setting. We conducted four focus groups and four in-depth interviews with 28 caregivers of young children with autism spectrum disorder and used thematic analysis to identify key themes. Eight contextual factors including culture, language, location of treatment, cost of treatment, type of service provider, support, parenting practices, and stigma emerged as important. Caregivers reported a preference for an affordable, in-home, individualized early autism spectrum disorder intervention, where they have an active voice in shaping treatment goals. Distrust of community-based health workers and challenges associated with autism spectrum disorder-related stigma were identified. Recommendations that integrate caregiver preferences with the development of a low-cost and scalable caregiver-mediated early autism spectrum disorder intervention are included. En ligne : http://dx.doi.org/10.1177/1362361317716604 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=370 [article] The importance of context in early autism intervention: A qualitative South African study [texte imprimé] / Jessy GULER, Auteur ; Petrus J. DE VRIES, Auteur ; Noleen SERIS, Auteur ; Nokuthula SHABALALA, Auteur ; Lauren FRANZ, Auteur . - p.1005-1017. Langues : Anglais (eng) in Autism > 22-8 (November 2018) . - p.1005-1017 Mots-clés : South Africa  autism spectrum disorder  caregivers  contextual factors  early intervention  focus group  low- and middle-income country  qualitative methods Index. décimale : PER Périodiques Résumé : The majority of individuals with autism spectrum disorder live in low- and middle-income countries and receive little or no services from health or social care systems. The development and validation of autism spectrum disorder interventions has almost exclusively occurred in high-income countries, leaving many unanswered questions regarding what contextual factors would need to be considered to ensure the effectiveness of interventions in low- and middle-income countries. This study qualitatively explored contextual factors relevant to the adaptation of a caregiver-mediated early autism spectrum disorder intervention in a low-resource South African setting. We conducted four focus groups and four in-depth interviews with 28 caregivers of young children with autism spectrum disorder and used thematic analysis to identify key themes. Eight contextual factors including culture, language, location of treatment, cost of treatment, type of service provider, support, parenting practices, and stigma emerged as important. Caregivers reported a preference for an affordable, in-home, individualized early autism spectrum disorder intervention, where they have an active voice in shaping treatment goals. Distrust of community-based health workers and challenges associated with autism spectrum disorder-related stigma were identified. Recommendations that integrate caregiver preferences with the development of a low-cost and scalable caregiver-mediated early autism spectrum disorder intervention are included. En ligne : http://dx.doi.org/10.1177/1362361317716604 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=370

---

1 (1 - 4 / 4) Par page : 25 50 100 200