Ability and Disability in Autism Spectrum Disorder: A Systematic Literature Review Employing the International Classification of Functioning, Disability and Health-Children and Youth Version / Elles DE SCHIPPER in Autism Research, 8-6 (December 2015)  

Public ISBD [article]  inAutism Research > 8-6 (December 2015) . - p.782-794 Titre : Ability and Disability in Autism Spectrum Disorder: A Systematic Literature Review Employing the International Classification of Functioning, Disability and Health-Children and Youth Version Type de document : Texte imprimé et/ou numérique Auteurs : Elles DE SCHIPPER, Auteur ; Aiko LUNDEQUIST, Auteur ; David COGHILL, Auteur ; Petrus J. DE VRIES, Auteur ; Mats GRANLUND, Auteur ; Martin HOLTMANN, Auteur ; Ulf JONSSON, Auteur ; Sunil KARANDE, Auteur ; John Elder ROBISON, Auteur ; Cory SHULMAN, Auteur ; Nidhi SINGHAL, Auteur ; Bruce TONGE, Auteur ; Virginia C.N. WONG, Auteur ; Lonnie ZWAIGENBAUM, Auteur ; Sven BÖLTE, Auteur Article en page(s) : p.782-794 Langues : Anglais (eng) Mots-clés : neurodevelopmental disorder  assessment  child psychiatry  diagnostics  International Classification of Diseases  Diagnostic and Statistical Manual of Mental Disorders  autism Index. décimale : PER Périodiques Résumé : Objective: This study is the first in a series of four empirical investigations to develop International Classification of Functioning, Disability and Health (ICF) Core Sets for Autism Spectrum Disorder (ASD). The objective was to use a systematic review approach to identify, number, and link functional ability and disability concepts used in the scientific ASD literature to the nomenclature of the ICF-CY (Children and Youth version of the ICF, covering the life span). Methods: Systematic searches on outcome studies of ASD were carried out in Medline/PubMed, PsycINFO, ERIC and Cinahl, and relevant functional ability and disability concepts extracted from the included studies. These concepts were then linked to the ICF-CY by two independent researchers using a standardized linking procedure. New concepts were extracted from the studies until saturation of identified ICF-CY categories was reached. Results: Seventy-one studies were included in the final analysis and 2475 meaningful concepts contained in these studies were linked to 146 ICF-CY categories. Of these, 99 categories were considered most relevant to ASD (i.e., identified in at least 5% of the studies), of which 63 were related to Activities and Participation, 28 were related to Body functions, and 8 were related to Environmental factors. The five most frequently identified categories were basic interpersonal interactions (51%), emotional functions (49%), complex interpersonal interactions (48%), attention functions (44%), and mental functions of language (44%). Conclusion: The broad variety of ICF-CY categories identified in this study reflects the heterogeneity of functional differences found in ASD—both with respect to disability and exceptionality—and underlines the potential value of the ICF-CY as a framework to capture an individual's functioning in all dimensions of life. The current results in combination with three additional preparatory studies (expert survey, focus groups, and clinical study) will provide the scientific basis for defining the ICF Core Sets for ASD for multipurpose use in basic and applied research and every day clinical practice of ASD. Autism Res 2015, 8: 782–794. © 2015 The Authors Autism Research published by Wiley Periodicals, Inc. on behalf of International Society for Autism Research En ligne : http://dx.doi.org/10.1002/aur.1485 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=278 [article] Ability and Disability in Autism Spectrum Disorder: A Systematic Literature Review Employing the International Classification of Functioning, Disability and Health-Children and Youth Version [Texte imprimé et/ou numérique] / Elles DE SCHIPPER, Auteur ; Aiko LUNDEQUIST, Auteur ; David COGHILL, Auteur ; Petrus J. DE VRIES, Auteur ; Mats GRANLUND, Auteur ; Martin HOLTMANN, Auteur ; Ulf JONSSON, Auteur ; Sunil KARANDE, Auteur ; John Elder ROBISON, Auteur ; Cory SHULMAN, Auteur ; Nidhi SINGHAL, Auteur ; Bruce TONGE, Auteur ; Virginia C.N. WONG, Auteur ; Lonnie ZWAIGENBAUM, Auteur ; Sven BÖLTE, Auteur . - p.782-794. Langues : Anglais (eng) in Autism Research > 8-6 (December 2015) . - p.782-794 Mots-clés : neurodevelopmental disorder  assessment  child psychiatry  diagnostics  International Classification of Diseases  Diagnostic and Statistical Manual of Mental Disorders  autism Index. décimale : PER Périodiques Résumé : Objective: This study is the first in a series of four empirical investigations to develop International Classification of Functioning, Disability and Health (ICF) Core Sets for Autism Spectrum Disorder (ASD). The objective was to use a systematic review approach to identify, number, and link functional ability and disability concepts used in the scientific ASD literature to the nomenclature of the ICF-CY (Children and Youth version of the ICF, covering the life span). Methods: Systematic searches on outcome studies of ASD were carried out in Medline/PubMed, PsycINFO, ERIC and Cinahl, and relevant functional ability and disability concepts extracted from the included studies. These concepts were then linked to the ICF-CY by two independent researchers using a standardized linking procedure. New concepts were extracted from the studies until saturation of identified ICF-CY categories was reached. Results: Seventy-one studies were included in the final analysis and 2475 meaningful concepts contained in these studies were linked to 146 ICF-CY categories. Of these, 99 categories were considered most relevant to ASD (i.e., identified in at least 5% of the studies), of which 63 were related to Activities and Participation, 28 were related to Body functions, and 8 were related to Environmental factors. The five most frequently identified categories were basic interpersonal interactions (51%), emotional functions (49%), complex interpersonal interactions (48%), attention functions (44%), and mental functions of language (44%). Conclusion: The broad variety of ICF-CY categories identified in this study reflects the heterogeneity of functional differences found in ASD—both with respect to disability and exceptionality—and underlines the potential value of the ICF-CY as a framework to capture an individual's functioning in all dimensions of life. The current results in combination with three additional preparatory studies (expert survey, focus groups, and clinical study) will provide the scientific basis for defining the ICF Core Sets for ASD for multipurpose use in basic and applied research and every day clinical practice of ASD. Autism Res 2015, 8: 782–794. © 2015 The Authors Autism Research published by Wiley Periodicals, Inc. on behalf of International Society for Autism Research En ligne : http://dx.doi.org/10.1002/aur.1485 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=278

Autism spectrum disorder in sub-saharan africa: A comprehensive scoping review / Lauren FRANZ in Autism Research, 10-5 (May 2017)  

Public ISBD [article]  inAutism Research > 10-5 (May 2017) . - p.723-749 Titre : Autism spectrum disorder in sub-saharan africa: A comprehensive scoping review Type de document : Texte imprimé et/ou numérique Auteurs : Lauren FRANZ, Auteur ; Nola J. CHAMBERS, Auteur ; Megan VON ISENBURG, Auteur ; Petrus J. DE VRIES, Auteur Article en page(s) : p.723-749 Langues : Anglais (eng) Mots-clés : autism  autism spectrum disorder  low- and middle-income countries  LMIC  low resource environments  Africa Index. décimale : PER Périodiques Résumé : Autism spectrum disorder (ASD) is recognized as a global public health concern, yet almost everything we know about ASD comes from high-income countries. Here we performed a scoping review of all research on ASD ever published in sub-Saharan Africa (SSA) in order to identify ASD knowledge gaps in this part of the world. Fifty-three publications met inclusion criteria. Themes included the phenotype, genetics and risk factors for ASD in SSA, screening and diagnosis, professional knowledge, interventions for ASD, parental perceptions, and social-cognitive neuroscience. No epidemiological, early intervention, school-based or adult studies were identified. For each identified theme, we aimed to summarize results and make recommendations to fill the knowledge gaps. The quality of study methodologies was generally not high. Few studies used standardized diagnostic instruments, and intervention studies were typically small-scale. Overall, findings suggest a substantial need for large-scale clinical, training, and research programmes to improve the lives of people who live with ASD in SSA. However, SSA also has the potential to make unique and globally-significant contributions to the etiology and treatments of ASD through implementation, interventional, and comparative genomic science. En ligne : http://dx.doi.org/10.1002/aur.1766 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=307 [article] Autism spectrum disorder in sub-saharan africa: A comprehensive scoping review [Texte imprimé et/ou numérique] / Lauren FRANZ, Auteur ; Nola J. CHAMBERS, Auteur ; Megan VON ISENBURG, Auteur ; Petrus J. DE VRIES, Auteur . - p.723-749. Langues : Anglais (eng) in Autism Research > 10-5 (May 2017) . - p.723-749 Mots-clés : autism  autism spectrum disorder  low- and middle-income countries  LMIC  low resource environments  Africa Index. décimale : PER Périodiques Résumé : Autism spectrum disorder (ASD) is recognized as a global public health concern, yet almost everything we know about ASD comes from high-income countries. Here we performed a scoping review of all research on ASD ever published in sub-Saharan Africa (SSA) in order to identify ASD knowledge gaps in this part of the world. Fifty-three publications met inclusion criteria. Themes included the phenotype, genetics and risk factors for ASD in SSA, screening and diagnosis, professional knowledge, interventions for ASD, parental perceptions, and social-cognitive neuroscience. No epidemiological, early intervention, school-based or adult studies were identified. For each identified theme, we aimed to summarize results and make recommendations to fill the knowledge gaps. The quality of study methodologies was generally not high. Few studies used standardized diagnostic instruments, and intervention studies were typically small-scale. Overall, findings suggest a substantial need for large-scale clinical, training, and research programmes to improve the lives of people who live with ASD in SSA. However, SSA also has the potential to make unique and globally-significant contributions to the etiology and treatments of ASD through implementation, interventional, and comparative genomic science. En ligne : http://dx.doi.org/10.1002/aur.1766 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=307

Classification of Functioning and Impairment: The Development of ICF Core Sets for Autism Spectrum Disorder / Sven BÖLTE in Autism Research, 7-1 (February 2014)  

Public ISBD [article]  inAutism Research > 7-1 (February 2014) . - p.167-172 Titre : Classification of Functioning and Impairment: The Development of ICF Core Sets for Autism Spectrum Disorder Type de document : Texte imprimé et/ou numérique Auteurs : Sven BÖLTE, Auteur ; Elles DE SCHIPPER, Auteur ; John Elder ROBISON, Auteur ; Virginia C.N. WONG, Auteur ; Melissa SELB, Auteur ; Nidhi SINGHAL, Auteur ; Petrus J. DE VRIES, Auteur ; Lonnie ZWAIGENBAUM, Auteur Article en page(s) : p.167-172 Langues : Anglais (eng) Mots-clés : neurodevelopmental disorders  autistic disorder  assessment  children and youth  psychiatry  mental health  health care  ICF  ICF Core Set Index. décimale : PER Périodiques Résumé : Given the variability seen in Autism Spectrum Disorder (ASD), accurate quantification of functioning is vital to studying outcome and quality of life in affected individuals. The International Classification of Functioning, Disability and Health (ICF) provides a comprehensive, universally accepted framework for the description of health-related functioning. ICF Core Sets are shortlists of ICF categories that are selected to capture those aspects of functioning that are most relevant when describing a person with a specific condition. In this paper, the authors preview the process for developing ICF Core Sets for ASD, a collaboration with the World Health Organization and the ICF Research Branch. The ICF Children and Youth version (ICF-CY) was derived from the ICF and designed to capture the specific situation of the developing child. As ASD affects individuals throughout the life span, and the ICF-CY includes all ICF categories, the ICF-CY will be used in this project (“ICF(-CY)” from now on). The ICF(-CY) categories to be included in the ICF Core Sets for ASD will be determined at an ICF Core Set Consensus Conference, where evidence from four preparatory studies (a systematic review, an expert survey, a patient and caregiver qualitative study, and a clinical cross-sectional study) will be integrated. Comprehensive and Brief ICF Core Sets for ASD will be developed with the goal of providing useful standards for research and clinical practice and generating a common language for functioning and impairment in ASD in different areas of life and across the life span. En ligne : http://dx.doi.org/10.1002/aur.1335 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=227 [article] Classification of Functioning and Impairment: The Development of ICF Core Sets for Autism Spectrum Disorder [Texte imprimé et/ou numérique] / Sven BÖLTE, Auteur ; Elles DE SCHIPPER, Auteur ; John Elder ROBISON, Auteur ; Virginia C.N. WONG, Auteur ; Melissa SELB, Auteur ; Nidhi SINGHAL, Auteur ; Petrus J. DE VRIES, Auteur ; Lonnie ZWAIGENBAUM, Auteur . - p.167-172. Langues : Anglais (eng) in Autism Research > 7-1 (February 2014) . - p.167-172 Mots-clés : neurodevelopmental disorders  autistic disorder  assessment  children and youth  psychiatry  mental health  health care  ICF  ICF Core Set Index. décimale : PER Périodiques Résumé : Given the variability seen in Autism Spectrum Disorder (ASD), accurate quantification of functioning is vital to studying outcome and quality of life in affected individuals. The International Classification of Functioning, Disability and Health (ICF) provides a comprehensive, universally accepted framework for the description of health-related functioning. ICF Core Sets are shortlists of ICF categories that are selected to capture those aspects of functioning that are most relevant when describing a person with a specific condition. In this paper, the authors preview the process for developing ICF Core Sets for ASD, a collaboration with the World Health Organization and the ICF Research Branch. The ICF Children and Youth version (ICF-CY) was derived from the ICF and designed to capture the specific situation of the developing child. As ASD affects individuals throughout the life span, and the ICF-CY includes all ICF categories, the ICF-CY will be used in this project (“ICF(-CY)” from now on). The ICF(-CY) categories to be included in the ICF Core Sets for ASD will be determined at an ICF Core Set Consensus Conference, where evidence from four preparatory studies (a systematic review, an expert survey, a patient and caregiver qualitative study, and a clinical cross-sectional study) will be integrated. Comprehensive and Brief ICF Core Sets for ASD will be developed with the goal of providing useful standards for research and clinical practice and generating a common language for functioning and impairment in ASD in different areas of life and across the life span. En ligne : http://dx.doi.org/10.1002/aur.1335 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=227

Feasibility of the Autism Navigator® JumpStart to Coaching in Everyday Activities course in South Africa / Petrus J. DE VRIES ; Amy M. WETHERBY in Autism, 28-9 (September 2024)  

Public ISBD [article]  inAutism > 28-9 (September 2024) . - p.2232-2243 Titre : Feasibility of the Autism Navigator® JumpStart to Coaching in Everyday Activities course in South Africa Type de document : Texte imprimé et/ou numérique Auteurs : Petrus J. DE VRIES, Auteur ; Amy M. WETHERBY, Auteur Article en page(s) : p.2232-2243 Langues : (en) Mots-clés : Autism Navigator  autism spectrum disorder  early intervention  Early Social Interaction  implementation  non-profit sector  professional development  South Africa Index. décimale : PER Périodiques Résumé : In low-resource settings, non-profit organisations play an essential role in providing services and support for families with young children with autism. However, resource constraints limit access to quality training in evidence-based interventions. Web-based training may help fill this gap. This study examined the feasibility, acceptability and appropriateness of the web-based Autism Navigator® JumpStart to Coaching in Everyday Activities course for 26 non-profit organisation providers (10 specialists and 16 non-specialists) in South Africa. Quantitative and qualitative methods were used including a post-training survey. Sixteen providers (62%) completed the course over an average period of 5.58?months, with many completing the course during lockdown restrictions, suggesting time as a barrier to course completion. No provider characteristics were related to attrition, nor to the time taken to complete the course. Better English proficiency, higher education levels and more positive attitudes to implementing an evidence-based intervention were associated with the number of attempts needed to pass some learner assessments, and to perceptions of course feasibility, acceptability, and appropriateness. Adaptations in the training delivery (using a group format and local group conference calls) and inclusion of South African video clips were identified as potential facilitators to acceptability and appropriateness. Lay Abstract In low-resource settings, non-profit organisations play an essential role in providing services and support for families with young children with autism, including in Africa. However, non-profit organisation service providers may not have access to quality training in proven intervention methods. Web-based or online courses may help to meet this need. In this study, we invited a group of specialist (10) and non-specialist (16) non-profit organisation providers in South Africa to complete a web-based course, Autism Navigator® JumpStart to Coaching in Everyday Activities, a 20-h self-paced course that provides training in an evidence-based parent coaching intervention called Early Social Interaction. We evaluated acceptability, appropriateness, and feasibility of the training. Of the 26 who enrolled, 16 completed the course (7 specialists and 9 non-specialists). All providers found it difficult to find time to do the course until the lockdown restrictions due to COVID-19, when most completed the course. Those whose first language was not English experienced more difficulties with two of six learner assessments and those who were not clinical specialists had more difficulty with the coaching strategies learner assessment. Most providers rated the course highly feasible, acceptable, and appropriate stating that the course content was very valuable and helpful in equipping them to serve their families. They felt the extensive video clips and regular meetings with a local trainer helped them engage with and understand the material. They suggested that including South African video clips would make the course more relatable. The fact that the course was web-based was identified as a strong benefit, especially during COVID-19 restrictions. En ligne : https://dx.doi.org/10.1177/13623613231223784 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=535 [article] Feasibility of the Autism Navigator® JumpStart to Coaching in Everyday Activities course in South Africa [Texte imprimé et/ou numérique] / Petrus J. DE VRIES, Auteur ; Amy M. WETHERBY, Auteur . - p.2232-2243. Langues : (en) in Autism > 28-9 (September 2024) . - p.2232-2243 Mots-clés : Autism Navigator  autism spectrum disorder  early intervention  Early Social Interaction  implementation  non-profit sector  professional development  South Africa Index. décimale : PER Périodiques Résumé : In low-resource settings, non-profit organisations play an essential role in providing services and support for families with young children with autism. However, resource constraints limit access to quality training in evidence-based interventions. Web-based training may help fill this gap. This study examined the feasibility, acceptability and appropriateness of the web-based Autism Navigator® JumpStart to Coaching in Everyday Activities course for 26 non-profit organisation providers (10 specialists and 16 non-specialists) in South Africa. Quantitative and qualitative methods were used including a post-training survey. Sixteen providers (62%) completed the course over an average period of 5.58?months, with many completing the course during lockdown restrictions, suggesting time as a barrier to course completion. No provider characteristics were related to attrition, nor to the time taken to complete the course. Better English proficiency, higher education levels and more positive attitudes to implementing an evidence-based intervention were associated with the number of attempts needed to pass some learner assessments, and to perceptions of course feasibility, acceptability, and appropriateness. Adaptations in the training delivery (using a group format and local group conference calls) and inclusion of South African video clips were identified as potential facilitators to acceptability and appropriateness. Lay Abstract In low-resource settings, non-profit organisations play an essential role in providing services and support for families with young children with autism, including in Africa. However, non-profit organisation service providers may not have access to quality training in proven intervention methods. Web-based or online courses may help to meet this need. In this study, we invited a group of specialist (10) and non-specialist (16) non-profit organisation providers in South Africa to complete a web-based course, Autism Navigator® JumpStart to Coaching in Everyday Activities, a 20-h self-paced course that provides training in an evidence-based parent coaching intervention called Early Social Interaction. We evaluated acceptability, appropriateness, and feasibility of the training. Of the 26 who enrolled, 16 completed the course (7 specialists and 9 non-specialists). All providers found it difficult to find time to do the course until the lockdown restrictions due to COVID-19, when most completed the course. Those whose first language was not English experienced more difficulties with two of six learner assessments and those who were not clinical specialists had more difficulty with the coaching strategies learner assessment. Most providers rated the course highly feasible, acceptable, and appropriate stating that the course content was very valuable and helpful in equipping them to serve their families. They felt the extensive video clips and regular meetings with a local trainer helped them engage with and understand the material. They suggested that including South African video clips would make the course more relatable. The fact that the course was web-based was identified as a strong benefit, especially during COVID-19 restrictions. En ligne : https://dx.doi.org/10.1177/13623613231223784 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=535

Non-specialist delivery of the WHO Caregiver Skills Training Programme for children with developmental disabilities: Stakeholder perspectives about acceptability and feasibility in rural Ethiopia / Mersha KINFE ; Kamrun Nahar KOLY ; Rehana ABDURAHMAN ; Fikirte GIRMA ; Charlotte HANLON ; Petrus J. DE VRIES ; Rosa A. HOEKSTRA in Autism, 28-1 (January 2024)  

Public ISBD [article]  inAutism > 28-1 (January 2024) . - p.95?106 Titre : Non-specialist delivery of the WHO Caregiver Skills Training Programme for children with developmental disabilities: Stakeholder perspectives about acceptability and feasibility in rural Ethiopia Type de document : Texte imprimé et/ou numérique Auteurs : Mersha KINFE, Auteur ; Kamrun Nahar KOLY, Auteur ; Rehana ABDURAHMAN, Auteur ; Fikirte GIRMA, Auteur ; Charlotte HANLON, Auteur ; Petrus J. DE VRIES, Auteur ; Rosa A. HOEKSTRA, Auteur Article en page(s) : p.95?106 Mots-clés : caregivers  developmental disabilities  non-specialist facilitators  World Health Organization caregiver skills training Index. décimale : PER Périodiques Résumé : Autism and other developmental disabilities are common in low- and middle-income countries. The World Health Organization developed the caregiver skills training programme to address the needs of families having children with developmental disabilities globally. This study explored the acceptability and feasibility of the caregiver skills training programme facilitated by non-specialists in rural Ethiopia, where contextual factors such as poverty, stigma and low literacy may affect training delivery. In-depth interviews were conducted with caregivers (n?=?19) and four focus groups with non-specialist facilitators (n?=?8) in two rural pilot tests of the caregiver skills training programme. Results suggested that participants experienced the caregiver skills training programme as acceptable and relevant for their context but suggested some modifications to improve the programme. Caregivers? accounts showed that facilitation by non-specialists was acceptable; facilitators emphasised the importance of supervision throughout the programme. Participants indicated that the home visit and group training modalities were acceptable and feasible. Facilitators indicated that some caregiver skills training programme topics were difficult to explain to caregivers; the concept of formalised play between caregiver and child was particularly foreign to caregivers. Lack of available toys made it difficult to practise some of the caregiver skills programme training exercises. These findings may have relevance to non-specialist delivery of the caregiver skills programme training and other parent-mediated interventions in low-resource contexts. Lay abstract Children with developmental disabilities including autism who live in low- and middle-income countries have very limited access to care and intervention. The World Health Organization initiated the caregiver skills training programme to support families with children with developmental disabilities. In Ethiopia, contextual factors such as poverty, low literacy and stigma may affect the success of the programme. In this study, we aimed to find out if the caregiver skills training programme is feasible to deliver in rural Ethiopia and acceptable to caregivers and programme facilitators. We trained non-specialist providers to facilitate the programme. Caregivers and non-specialist facilitators were asked about their experiences in interviews and group discussions. Caregivers found the programme relevant to their lives and reported benefits of participation. Facilitators highlighted the skills they had acquired but also emphasised the importance of support from supervisors during the programme. They described that some caregiver skills training programme topics were difficult to teach caregivers. In particular, the idea of play between caregiver and child was unfamiliar to many caregivers. Lack of available toys made it difficult to practise some of the caregiver skills training programme exercises. Participants indicated that the home visits and group training programme components of the caregiver skills training were acceptable and feasible, but there were some practical barriers, such as transportation issues and lack of time for homework practice. These findings may have importance to non-specialist delivery of the caregiver skills training programme in other low-income countries. En ligne : https://dx.doi.org/10.1177/13623613231162155 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519 [article] Non-specialist delivery of the WHO Caregiver Skills Training Programme for children with developmental disabilities: Stakeholder perspectives about acceptability and feasibility in rural Ethiopia [Texte imprimé et/ou numérique] / Mersha KINFE, Auteur ; Kamrun Nahar KOLY, Auteur ; Rehana ABDURAHMAN, Auteur ; Fikirte GIRMA, Auteur ; Charlotte HANLON, Auteur ; Petrus J. DE VRIES, Auteur ; Rosa A. HOEKSTRA, Auteur . - p.95?106. in Autism > 28-1 (January 2024) . - p.95?106 Mots-clés : caregivers  developmental disabilities  non-specialist facilitators  World Health Organization caregiver skills training Index. décimale : PER Périodiques Résumé : Autism and other developmental disabilities are common in low- and middle-income countries. The World Health Organization developed the caregiver skills training programme to address the needs of families having children with developmental disabilities globally. This study explored the acceptability and feasibility of the caregiver skills training programme facilitated by non-specialists in rural Ethiopia, where contextual factors such as poverty, stigma and low literacy may affect training delivery. In-depth interviews were conducted with caregivers (n?=?19) and four focus groups with non-specialist facilitators (n?=?8) in two rural pilot tests of the caregiver skills training programme. Results suggested that participants experienced the caregiver skills training programme as acceptable and relevant for their context but suggested some modifications to improve the programme. Caregivers? accounts showed that facilitation by non-specialists was acceptable; facilitators emphasised the importance of supervision throughout the programme. Participants indicated that the home visit and group training modalities were acceptable and feasible. Facilitators indicated that some caregiver skills training programme topics were difficult to explain to caregivers; the concept of formalised play between caregiver and child was particularly foreign to caregivers. Lack of available toys made it difficult to practise some of the caregiver skills programme training exercises. These findings may have relevance to non-specialist delivery of the caregiver skills programme training and other parent-mediated interventions in low-resource contexts. Lay abstract Children with developmental disabilities including autism who live in low- and middle-income countries have very limited access to care and intervention. The World Health Organization initiated the caregiver skills training programme to support families with children with developmental disabilities. In Ethiopia, contextual factors such as poverty, low literacy and stigma may affect the success of the programme. In this study, we aimed to find out if the caregiver skills training programme is feasible to deliver in rural Ethiopia and acceptable to caregivers and programme facilitators. We trained non-specialist providers to facilitate the programme. Caregivers and non-specialist facilitators were asked about their experiences in interviews and group discussions. Caregivers found the programme relevant to their lives and reported benefits of participation. Facilitators highlighted the skills they had acquired but also emphasised the importance of support from supervisors during the programme. They described that some caregiver skills training programme topics were difficult to teach caregivers. In particular, the idea of play between caregiver and child was unfamiliar to many caregivers. Lack of available toys made it difficult to practise some of the caregiver skills training programme exercises. Participants indicated that the home visits and group training programme components of the caregiver skills training were acceptable and feasible, but there were some practical barriers, such as transportation issues and lack of time for homework practice. These findings may have importance to non-specialist delivery of the caregiver skills training programme in other low-income countries. En ligne : https://dx.doi.org/10.1177/13623613231162155 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519

Supporting caregivers of children with developmental disabilities: Findings from a brief caregiver well-being programme in South Africa / Nola CHAMBERS ; David ROSENSTEIN ; Petro ERASMUS ; Petrus J. DE VRIES in Autism, 28-1 (January 2024)  

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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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Translation and cultural appropriateness of the Autism Diagnostic Observation Schedule-2 in Afrikaans / Lesia SMITH in Autism, 21-5 (July 2017)  

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Tuberous sclerosis / Petrus J. DE VRIES

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Viewing Animal Models for Tuberous Sclerosis Complex in the Light of Evolution / Christopher J. HOWE

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?We are doing damage control?: Government stakeholder perspectives of educational and other services for children with autism spectrum disorder in South Africa / Madeleine DUNCAN ; Petrus J. DE VRIES in Autism, 28-1 (January 2024)  

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