Dépouillements

Shifting the centre of gravity: Towards a truly global representation in autism research / Chung-Hsin CHIANG ; Michele VILLALOBOS ; Muideen BAKARE ; Rosa A. HOEKSTRA in Autism, 28-1 (January 2024)  

Public ISBD [article]  inAutism > 28-1 (January 2024) . - p.3?5 Titre : Shifting the centre of gravity: Towards a truly global representation in autism research Type de document : Texte imprimé et/ou numérique Auteurs : Chung-Hsin CHIANG, Auteur ; Michele VILLALOBOS, Auteur ; Muideen BAKARE, Auteur ; Rosa A. HOEKSTRA, Auteur Article en page(s) : p.3?5 Index. décimale : PER Périodiques En ligne : https://dx.doi.org/10.1177/13623613231214644 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519 [article] Shifting the centre of gravity: Towards a truly global representation in autism research [Texte imprimé et/ou numérique] / Chung-Hsin CHIANG, Auteur ; Michele VILLALOBOS, Auteur ; Muideen BAKARE, Auteur ; Rosa A. HOEKSTRA, Auteur . - p.3?5. in Autism > 28-1 (January 2024) . - p.3?5 Index. décimale : PER Périodiques En ligne : https://dx.doi.org/10.1177/13623613231214644 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519

Digital tools for direct assessment of autism risk during early childhood: A systematic review / Supriya BHAVNANI ; Georgia LOCKWOOD ESTRIN ; Vaisnavi RAO ; Jayashree DASGUPTA ; Hiba IRFAN ; Bhismadev CHAKRABARTI ; Vikram PATEL ; Matthew K. BELMONTE in Autism, 28-1 (January 2024)  

Public ISBD [article]  inAutism > 28-1 (January 2024) . - p.6?31 Titre : Digital tools for direct assessment of autism risk during early childhood: A systematic review Type de document : Texte imprimé et/ou numérique Auteurs : Supriya BHAVNANI, Auteur ; Georgia LOCKWOOD ESTRIN, Auteur ; Vaisnavi RAO, Auteur ; Jayashree DASGUPTA, Auteur ; Hiba IRFAN, Auteur ; Bhismadev CHAKRABARTI, Auteur ; Vikram PATEL, Auteur ; Matthew K. BELMONTE, Auteur Article en page(s) : p.6?31 Mots-clés : ASD  assessments  computer  digital  gamified  low-resource  mHealth  scalable  smartphone  tablet  virtual reality Index. décimale : PER Périodiques Résumé : Current challenges in early identification of autism spectrum disorder lead to significant delays in starting interventions, thereby compromising outcomes. Digital tools can potentially address this barrier as they are accessible, can measure autism-relevant phenotypes and can be administered in children?s natural environments by non-specialists. The purpose of this systematic review is to identify and characterise potentially scalable digital tools for direct assessment of autism spectrum disorder risk in early childhood. In total, 51,953 titles, 6884 abstracts and 567 full-text articles from four databases were screened using predefined criteria. Of these, 38 met inclusion criteria. Tasks are presented on both portable and non-portable technologies, typically by researchers in laboratory or clinic settings. Gamified tasks, virtual-reality platforms and automated analysis of video or audio recordings of children?s behaviours and speech are used to assess autism spectrum disorder risk. Tasks tapping social communication/interaction and motor domains most reliably discriminate between autism spectrum disorder and typically developing groups. Digital tools employing objective data collection and analysis methods hold immense potential for early identification of autism spectrum disorder risk. Next steps should be to further validate these tools, evaluate their generalisability outside laboratory or clinic settings, and standardise derived measures across tasks. Furthermore, stakeholders from underserved communities should be involved in the research and development process. Lay abstract The challenge of finding autistic children, and finding them early enough to make a difference for them and their families, becomes all the greater in parts of the world where human and material resources are in short supply. Poverty of resources delays interventions, translating into a poverty of outcomes. Digital tools carry potential to lessen this delay because they can be administered by non-specialists in children?s homes, schools or other everyday environments, they can measure a wide range of autistic behaviours objectively and they can automate analysis without requiring an expert in computers or statistics. This literature review aimed to identify and describe digital tools for screening children who may be at risk for autism. These tools are predominantly at the ?proof-of-concept? stage. Both portable (laptops, mobile phones, smart toys) and fixed (desktop computers, virtual-reality platforms) technologies are used to present computerised games, or to record children?s behaviours or speech. Computerised analysis of children?s interactions with these technologies differentiates children with and without autism, with promising results. Tasks assessing social responses and hand and body movements are the most reliable in distinguishing autistic from typically developing children. Such digital tools hold immense potential for early identification of autism spectrum disorder risk at a large scale. Next steps should be to further validate these tools and to evaluate their applicability in a variety of settings. Crucially, stakeholders from underserved communities globally must be involved in this research, lest it fail to capture the issues that these stakeholders are facing. En ligne : https://dx.doi.org/10.1177/13623613221133176 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519 [article] Digital tools for direct assessment of autism risk during early childhood: A systematic review [Texte imprimé et/ou numérique] / Supriya BHAVNANI, Auteur ; Georgia LOCKWOOD ESTRIN, Auteur ; Vaisnavi RAO, Auteur ; Jayashree DASGUPTA, Auteur ; Hiba IRFAN, Auteur ; Bhismadev CHAKRABARTI, Auteur ; Vikram PATEL, Auteur ; Matthew K. BELMONTE, Auteur . - p.6?31. in Autism > 28-1 (January 2024) . - p.6?31 Mots-clés : ASD  assessments  computer  digital  gamified  low-resource  mHealth  scalable  smartphone  tablet  virtual reality Index. décimale : PER Périodiques Résumé : Current challenges in early identification of autism spectrum disorder lead to significant delays in starting interventions, thereby compromising outcomes. Digital tools can potentially address this barrier as they are accessible, can measure autism-relevant phenotypes and can be administered in children?s natural environments by non-specialists. The purpose of this systematic review is to identify and characterise potentially scalable digital tools for direct assessment of autism spectrum disorder risk in early childhood. In total, 51,953 titles, 6884 abstracts and 567 full-text articles from four databases were screened using predefined criteria. Of these, 38 met inclusion criteria. Tasks are presented on both portable and non-portable technologies, typically by researchers in laboratory or clinic settings. Gamified tasks, virtual-reality platforms and automated analysis of video or audio recordings of children?s behaviours and speech are used to assess autism spectrum disorder risk. Tasks tapping social communication/interaction and motor domains most reliably discriminate between autism spectrum disorder and typically developing groups. Digital tools employing objective data collection and analysis methods hold immense potential for early identification of autism spectrum disorder risk. Next steps should be to further validate these tools, evaluate their generalisability outside laboratory or clinic settings, and standardise derived measures across tasks. Furthermore, stakeholders from underserved communities should be involved in the research and development process. Lay abstract The challenge of finding autistic children, and finding them early enough to make a difference for them and their families, becomes all the greater in parts of the world where human and material resources are in short supply. Poverty of resources delays interventions, translating into a poverty of outcomes. Digital tools carry potential to lessen this delay because they can be administered by non-specialists in children?s homes, schools or other everyday environments, they can measure a wide range of autistic behaviours objectively and they can automate analysis without requiring an expert in computers or statistics. This literature review aimed to identify and describe digital tools for screening children who may be at risk for autism. These tools are predominantly at the ?proof-of-concept? stage. Both portable (laptops, mobile phones, smart toys) and fixed (desktop computers, virtual-reality platforms) technologies are used to present computerised games, or to record children?s behaviours or speech. Computerised analysis of children?s interactions with these technologies differentiates children with and without autism, with promising results. Tasks assessing social responses and hand and body movements are the most reliable in distinguishing autistic from typically developing children. Such digital tools hold immense potential for early identification of autism spectrum disorder risk at a large scale. Next steps should be to further validate these tools and to evaluate their applicability in a variety of settings. Crucially, stakeholders from underserved communities globally must be involved in this research, lest it fail to capture the issues that these stakeholders are facing. En ligne : https://dx.doi.org/10.1177/13623613221133176 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519

The factor structure and measurement invariance of the Autism Spectrum Quotient-28: A cross-cultural comparison between Malaysia and the Netherlands / Anke M. SCHEEREN ; Marieke DE VRIES in Autism, 28-1 (January 2024)  

Public ISBD [article]  inAutism > 28-1 (January 2024) . - p.32?42 Titre : The factor structure and measurement invariance of the Autism Spectrum Quotient-28: A cross-cultural comparison between Malaysia and the Netherlands Type de document : Texte imprimé et/ou numérique Auteurs : Anke M. SCHEEREN, Auteur ; Marieke DE VRIES, Auteur Article en page(s) : p.32?42 Mots-clés : autism-spectrum quotient  culture  differential item functioning  factor structure  measurement invariance Index. décimale : PER Périodiques Résumé : Despite several psychometric advantages over the 50-item Autism Spectrum Quotient, an instrument used to measure autistic traits, the abridged AQ-28 and its cross-cultural validity have not been examined as extensively. Therefore, this study aimed to examine the factor structure and measurement invariance of the AQ-28 in 818 Dutch (Mage?=?37.4, 581 females, 233 males, 4 others) and 437 Malaysian (Mage?=?23.0, 328 females, 99 males, 10 others) participants from the general population. The hierarchical structure of the AQ-28 showed fair and good fit in Malaysia and in the Netherlands, respectively. A multi-group invariance analysis supported that the AQ-28 is cross-culturally invariant. Malaysians (M?=?68.63, SD?=?8.33) scored significantly higher than Dutch participants (M?=?51.48, SD?=?10.30) on the AQ-28 while gender was controlled for. While the measurement invariance suggests that the AQ-28 functions similarly in Malaysia and the Netherlands in terms of structure, exploratory analyses showed 11 items with differential item functioning. Hence, while the AQ-28 possesses a stable factor structure and appears to measure the same latent traits in Malaysia and the Netherlands, some items potentially display cultural bias which, in turn, might explain the differences in AQ scores. Lay abstract The AQ-28 is a questionnaire measuring autistic traits, that is, traits that are related to Autism Spectrum Conditions, but its reliability in other cultures has not been thoroughly evaluated. We, therefore, tested whether the properties of the AQ-28 are comparable between two countries with different cultures, Malaysia and the Netherlands. A total of 437 Malaysian and 818 Dutch participants completed the AQ-28 online. We measured whether the AQ-28 measures autistic traits similarly in Malaysia and the Netherlands. The AQ-28 measures autistic traits similarly, and the reliability was acceptable and good in the general population of Malaysia and the Netherlands, respectively. However, Malaysians scored higher than Dutch participants. Moreover, 11 AQ-28 items showed cultural bias, indicating that these items are answered/interpreted differently in Malaysia and the Netherlands. Cross-cultural differences in interpreting, reporting, and/or expressing autistic traits highlighted in this study could potentially explain why some items are culturally biased and why Malaysians score higher on these items. The findings of this work imply that cutoff scores derived from one culture should not be generalised to another culture. Moreover, the findings are informative for future development of culturally neutral or appropriate screening and diagnostic tools for autism. En ligne : https://dx.doi.org/10.1177/13623613221147395 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519 [article] The factor structure and measurement invariance of the Autism Spectrum Quotient-28: A cross-cultural comparison between Malaysia and the Netherlands [Texte imprimé et/ou numérique] / Anke M. SCHEEREN, Auteur ; Marieke DE VRIES, Auteur . - p.32?42. in Autism > 28-1 (January 2024) . - p.32?42 Mots-clés : autism-spectrum quotient  culture  differential item functioning  factor structure  measurement invariance Index. décimale : PER Périodiques Résumé : Despite several psychometric advantages over the 50-item Autism Spectrum Quotient, an instrument used to measure autistic traits, the abridged AQ-28 and its cross-cultural validity have not been examined as extensively. Therefore, this study aimed to examine the factor structure and measurement invariance of the AQ-28 in 818 Dutch (Mage?=?37.4, 581 females, 233 males, 4 others) and 437 Malaysian (Mage?=?23.0, 328 females, 99 males, 10 others) participants from the general population. The hierarchical structure of the AQ-28 showed fair and good fit in Malaysia and in the Netherlands, respectively. A multi-group invariance analysis supported that the AQ-28 is cross-culturally invariant. Malaysians (M?=?68.63, SD?=?8.33) scored significantly higher than Dutch participants (M?=?51.48, SD?=?10.30) on the AQ-28 while gender was controlled for. While the measurement invariance suggests that the AQ-28 functions similarly in Malaysia and the Netherlands in terms of structure, exploratory analyses showed 11 items with differential item functioning. Hence, while the AQ-28 possesses a stable factor structure and appears to measure the same latent traits in Malaysia and the Netherlands, some items potentially display cultural bias which, in turn, might explain the differences in AQ scores. Lay abstract The AQ-28 is a questionnaire measuring autistic traits, that is, traits that are related to Autism Spectrum Conditions, but its reliability in other cultures has not been thoroughly evaluated. We, therefore, tested whether the properties of the AQ-28 are comparable between two countries with different cultures, Malaysia and the Netherlands. A total of 437 Malaysian and 818 Dutch participants completed the AQ-28 online. We measured whether the AQ-28 measures autistic traits similarly in Malaysia and the Netherlands. The AQ-28 measures autistic traits similarly, and the reliability was acceptable and good in the general population of Malaysia and the Netherlands, respectively. However, Malaysians scored higher than Dutch participants. Moreover, 11 AQ-28 items showed cultural bias, indicating that these items are answered/interpreted differently in Malaysia and the Netherlands. Cross-cultural differences in interpreting, reporting, and/or expressing autistic traits highlighted in this study could potentially explain why some items are culturally biased and why Malaysians score higher on these items. The findings of this work imply that cutoff scores derived from one culture should not be generalised to another culture. Moreover, the findings are informative for future development of culturally neutral or appropriate screening and diagnostic tools for autism. En ligne : https://dx.doi.org/10.1177/13623613221147395 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519

Attention control in autism: Eye-tracking findings from pre-school children in a low- and middle-income country setting / Luke MASON ; Rashi ARORA ; Supriya BHAVNANI ; Jayashree DASGUPTA ; Sheffali GULATI ; Teodora GLIGA ; Mark H. JOHNSON in Autism, 28-1 (January 2024)  

Public ISBD [article]  inAutism > 28-1 (January 2024) . - p.43?57 Titre : Attention control in autism: Eye-tracking findings from pre-school children in a low- and middle-income country setting Type de document : Texte imprimé et/ou numérique Auteurs : Luke MASON, Auteur ; Rashi ARORA, Auteur ; Supriya BHAVNANI, Auteur ; Jayashree DASGUPTA, Auteur ; Sheffali GULATI, Auteur ; Teodora GLIGA, Auteur ; Mark H. JOHNSON, Auteur Article en page(s) : p.43?57 Mots-clés : autism spectrum disorders  cognition (attention  learning  memory)  development  pre-school children Index. décimale : PER Périodiques Résumé : Alterations in the development of attention control and learning have been associated with autism and can be measured using the ?antisaccade task?, which assesses a child?s ability to make an oculomotor response away from a distracting stimulus, and learn to instead anticipate a later reward. We aimed to assess these cognitive processes using portable eye-tracking in an understudied population of pre-school children with and without a diagnosis of autism spectrum disorder in community settings in New Delhi, India. The eye-tracking antisaccade task was presented to children in three groups (n?=?104) (children with a clinical diagnosis of autism spectrum disorder or intellectual disability and children meeting developmental milestones). In accordance with findings from high-income, laboratory-based environments, children learnt to anticipate looks towards a reward, as well as inhibit eye-movements towards a distractor stimulus. We also provide novel evidence that while differences in inhibition responses might be applicable to multiple developmental conditions, a reduced learning to anticipate looks towards a target in this age group may be specific to autism. This eye-tracking task may, therefore, have the potential to identify and assess autism specific traits across development, and be used in longitudinal research studies such as investigating response to intervention in low-resource settings. Lay abstract The development of cognitive processes, such as attention control and learning, has been suggested to be altered in children with a diagnosis of autism spectrum disorder. However, nearly all of our understanding of the development of these cognitive processes comes from studies with school-aged or older children in high-income countries, and from research conducted in a controlled laboratory environment, thereby restricting the potential generalisability of results and away from the majority of the world?s population. We need to expand our research to investigate abilities beyond these limited settings. We address shortcomings in the literature by (1) studying attention control and learning in an understudied population of children in a low- and middle-income country setting in India, (2) focusing research on a critical younger age group of children and (3) using portable eye-tracking technology that can be taken into communities and healthcare settings to increase the accessibility of research in hard-to-reach populations. Our results provide novel evidence on differences in attention control and learning responses in groups of children with and without a diagnosis of autism spectrum disorder. We show that learning responses in children that we assessed through a portable eye-tracking task, called the ?antisaccade task?, may be specific to autism. This suggests that the methods we use may have the potential to identify and assess autism-specific traits across development, and be used in research in low-resource settings. En ligne : https://dx.doi.org/10.1177/13623613221149541 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519 [article] Attention control in autism: Eye-tracking findings from pre-school children in a low- and middle-income country setting [Texte imprimé et/ou numérique] / Luke MASON, Auteur ; Rashi ARORA, Auteur ; Supriya BHAVNANI, Auteur ; Jayashree DASGUPTA, Auteur ; Sheffali GULATI, Auteur ; Teodora GLIGA, Auteur ; Mark H. JOHNSON, Auteur . - p.43?57. in Autism > 28-1 (January 2024) . - p.43?57 Mots-clés : autism spectrum disorders  cognition (attention  learning  memory)  development  pre-school children Index. décimale : PER Périodiques Résumé : Alterations in the development of attention control and learning have been associated with autism and can be measured using the ?antisaccade task?, which assesses a child?s ability to make an oculomotor response away from a distracting stimulus, and learn to instead anticipate a later reward. We aimed to assess these cognitive processes using portable eye-tracking in an understudied population of pre-school children with and without a diagnosis of autism spectrum disorder in community settings in New Delhi, India. The eye-tracking antisaccade task was presented to children in three groups (n?=?104) (children with a clinical diagnosis of autism spectrum disorder or intellectual disability and children meeting developmental milestones). In accordance with findings from high-income, laboratory-based environments, children learnt to anticipate looks towards a reward, as well as inhibit eye-movements towards a distractor stimulus. We also provide novel evidence that while differences in inhibition responses might be applicable to multiple developmental conditions, a reduced learning to anticipate looks towards a target in this age group may be specific to autism. This eye-tracking task may, therefore, have the potential to identify and assess autism specific traits across development, and be used in longitudinal research studies such as investigating response to intervention in low-resource settings. Lay abstract The development of cognitive processes, such as attention control and learning, has been suggested to be altered in children with a diagnosis of autism spectrum disorder. However, nearly all of our understanding of the development of these cognitive processes comes from studies with school-aged or older children in high-income countries, and from research conducted in a controlled laboratory environment, thereby restricting the potential generalisability of results and away from the majority of the world?s population. We need to expand our research to investigate abilities beyond these limited settings. We address shortcomings in the literature by (1) studying attention control and learning in an understudied population of children in a low- and middle-income country setting in India, (2) focusing research on a critical younger age group of children and (3) using portable eye-tracking technology that can be taken into communities and healthcare settings to increase the accessibility of research in hard-to-reach populations. Our results provide novel evidence on differences in attention control and learning responses in groups of children with and without a diagnosis of autism spectrum disorder. We show that learning responses in children that we assessed through a portable eye-tracking task, called the ?antisaccade task?, may be specific to autism. This suggests that the methods we use may have the potential to identify and assess autism-specific traits across development, and be used in research in low-resource settings. En ligne : https://dx.doi.org/10.1177/13623613221149541 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519

Age of autism diagnosis in Latin American and Caribbean countries / Maria C. MONTENEGRO ; Ana C. RAMIREZ ; Daniel VALDEZ ; Analia ROSOLI ; Ricardo GARCIA ; Gabriela GARRIDO ; Sebastián CUKIER ; Alexia RATTAZZI ; Cristiane Silvestre PAULA in Autism, 28-1 (January 2024)  

Public ISBD [article]  inAutism > 28-1 (January 2024) . - p.58?72 Titre : Age of autism diagnosis in Latin American and Caribbean countries Type de document : Texte imprimé et/ou numérique Auteurs : Maria C. MONTENEGRO, Auteur ; Ana C. RAMIREZ, Auteur ; Daniel VALDEZ, Auteur ; Analia ROSOLI, Auteur ; Ricardo GARCIA, Auteur ; Gabriela GARRIDO, Auteur ; Sebastián CUKIER, Auteur ; Alexia RATTAZZI, Auteur ; Cristiane Silvestre PAULA, Auteur Article en page(s) : p.58?72 Mots-clés : age of diagnosis  autism spectrum disorders  caregivers  first observed concerns  Latin America  risk factors Index. décimale : PER Périodiques Résumé : An earlier diagnosis of autism spectrum disorder might lead to an earlier intervention, yet knowledge and awareness of autism spectrum disorder in Latin America and Caribbean Countries are limited. A later autism spectrum disorder diagnosis has been associated with negative consequences, as it might imply later access to services. This study aims to identify factors associated with the age of autism spectrum disorder diagnosis as reported by 2520 caregivers of autistic children from six Latin America and Caribbean Countries. Results indicate that on average, caregivers were concerned about their child?s development by 22?months of age; however, the diagnosis was 24?months later. Current age of autistic individuals, better language abilities, and having public health coverage increased the age of diagnosis. On the contrary, the presence of medical comorbidities, severity level, and type of diagnosis decreased the age of diagnosis. The age of diagnosis of autistic individuals in Latin America and Caribbean Countries corresponded to the start of formal schooling despite a much earlier age of first noticed developmental concern, highlighting the need to reduce this age gap and increase children?s probability of benefiting from early intervention. Taken together, autism spectrum disorder personal/clinical characteristics and access to health service are the main determinants for the age of diagnosis. Lay abstract An earlier diagnosis of autism spectrum disorder might lead to earlier intervention. However, people living in Latin American and Caribbean countries do not have much knowledge about autism spectrum disorder symptoms. It has been suggested that the older a child is when diagnosed, the fewer opportunities he or she will have to receive services. We asked 2520 caregivers of autistic children in six different Latin America and Caribbean Countries, the child?s age when they noticed some developmental delays and their child?s age when they received their first autism spectrum disorder diagnosis. Results indicate that, on average, caregivers were concerned about their child?s development by 22?months of age; however, the diagnosis was received when the child was 46?months of age. In addition, older children with better language abilities and public health coverage (opposed to private health coverage) were diagnosed later. On the contrary, children with other medical problems and more severe behaviors received an earlier diagnosis. In our study, children were diagnosed around the time they entered formal schooling, delaying the access to early intervention programs. In summary, the characteristics of the autistic person and the type of health coverage influence the age of diagnosis in children living in Latin America and Caribbean Countries. En ligne : https://dx.doi.org/10.1177/13623613221147345 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519 [article] Age of autism diagnosis in Latin American and Caribbean countries [Texte imprimé et/ou numérique] / Maria C. MONTENEGRO, Auteur ; Ana C. RAMIREZ, Auteur ; Daniel VALDEZ, Auteur ; Analia ROSOLI, Auteur ; Ricardo GARCIA, Auteur ; Gabriela GARRIDO, Auteur ; Sebastián CUKIER, Auteur ; Alexia RATTAZZI, Auteur ; Cristiane Silvestre PAULA, Auteur . - p.58?72. in Autism > 28-1 (January 2024) . - p.58?72 Mots-clés : age of diagnosis  autism spectrum disorders  caregivers  first observed concerns  Latin America  risk factors Index. décimale : PER Périodiques Résumé : An earlier diagnosis of autism spectrum disorder might lead to an earlier intervention, yet knowledge and awareness of autism spectrum disorder in Latin America and Caribbean Countries are limited. A later autism spectrum disorder diagnosis has been associated with negative consequences, as it might imply later access to services. This study aims to identify factors associated with the age of autism spectrum disorder diagnosis as reported by 2520 caregivers of autistic children from six Latin America and Caribbean Countries. Results indicate that on average, caregivers were concerned about their child?s development by 22?months of age; however, the diagnosis was 24?months later. Current age of autistic individuals, better language abilities, and having public health coverage increased the age of diagnosis. On the contrary, the presence of medical comorbidities, severity level, and type of diagnosis decreased the age of diagnosis. The age of diagnosis of autistic individuals in Latin America and Caribbean Countries corresponded to the start of formal schooling despite a much earlier age of first noticed developmental concern, highlighting the need to reduce this age gap and increase children?s probability of benefiting from early intervention. Taken together, autism spectrum disorder personal/clinical characteristics and access to health service are the main determinants for the age of diagnosis. Lay abstract An earlier diagnosis of autism spectrum disorder might lead to earlier intervention. However, people living in Latin American and Caribbean countries do not have much knowledge about autism spectrum disorder symptoms. It has been suggested that the older a child is when diagnosed, the fewer opportunities he or she will have to receive services. We asked 2520 caregivers of autistic children in six different Latin America and Caribbean Countries, the child?s age when they noticed some developmental delays and their child?s age when they received their first autism spectrum disorder diagnosis. Results indicate that, on average, caregivers were concerned about their child?s development by 22?months of age; however, the diagnosis was received when the child was 46?months of age. In addition, older children with better language abilities and public health coverage (opposed to private health coverage) were diagnosed later. On the contrary, children with other medical problems and more severe behaviors received an earlier diagnosis. In our study, children were diagnosed around the time they entered formal schooling, delaying the access to early intervention programs. In summary, the characteristics of the autistic person and the type of health coverage influence the age of diagnosis in children living in Latin America and Caribbean Countries. En ligne : https://dx.doi.org/10.1177/13623613221147345 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519

?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)  

Public ISBD [article]  inAutism > 28-1 (January 2024) . - p.73?83 Titre : ?We are doing damage control?: Government stakeholder perspectives of educational and other services for children with autism spectrum disorder in South Africa Type de document : Texte imprimé et/ou numérique Auteurs : Madeleine DUNCAN, Auteur ; Petrus J. DE VRIES, Auteur Article en page(s) : p.73?83 Mots-clés : autism spectrum disorder  education  government stakeholder perspectives  low- and middle-income countries  qualitative research  service delivery Index. décimale : PER Périodiques Résumé : Autism spectrum disorder is a growing public health concern in low-and middle-income countries that has prompted a World Health Organization resolution on ?comprehensive and coordinated efforts for management of autism spectrum disorder?. Despite being a signatory of the resolution, South Africa does not have any national policies to guide the management of autism spectrum disorder services. This study explored the perspectives of key government stakeholders on educational and other services for children with autism spectrum disorder in the Western Cape Province of South Africa and their proposed solutions to meet the needs of autistic children and their families. The overarching theme that emerged was ?We are doing damage control?. Government stakeholders acknowledged that autism spectrum disorder services were falling between the ?cracks? caused by competing societal demands on government resources. Participants shared perspectives about autism spectrum disorder services in three categories: a cracked society, siloed service systems and gap-filling strategies. Findings from this study highlighted the need for collaborative efforts between government departments and civil society to develop a strategy for autism spectrum disorder in line with the World Health Organization resolution. Multistakeholder engagement to break down barriers, strengthen systems and develop innovative solutions to improving services for children with autism spectrum disorder and their families is recommended. Lay abstract Autism spectrum disorder is a growing public health concern in low- and middle-income countries like South Africa where there are no plans or policies in place for autism spectrum disorder management. Many children with autism spectrum disorder in South Africa are out of schools and waiting for school placement to become available. This study explored the perspectives of key government stakeholders on educational and other services for children with autism spectrum disorder in the Western Cape Province of South Africa and their suggestion for improving services for these children and their families. Semi-structured interviews were conducted with government stakeholders from the Western Cape Department of Education, Department of Health and the Department of Social development. The main theme that emerged was ?We are doing damage control?. Government stakeholders acknowledged that autism spectrum disorder services were being overlooked because of other demands on government resources. Finding from this study highlighted the need for government departments to work together to develop a strategy for autism spectrum disorder management. Engagement between government and civil society to break down barriers, strengthen systems and develop solutions to improving access to services for children with autism spectrum disorder and their families is recommended. En ligne : https://dx.doi.org/10.1177/13623613221142111 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519 [article] ?We are doing damage control?: Government stakeholder perspectives of educational and other services for children with autism spectrum disorder in South Africa [Texte imprimé et/ou numérique] / Madeleine DUNCAN, Auteur ; Petrus J. DE VRIES, Auteur . - p.73?83. in Autism > 28-1 (January 2024) . - p.73?83 Mots-clés : autism spectrum disorder  education  government stakeholder perspectives  low- and middle-income countries  qualitative research  service delivery Index. décimale : PER Périodiques Résumé : Autism spectrum disorder is a growing public health concern in low-and middle-income countries that has prompted a World Health Organization resolution on ?comprehensive and coordinated efforts for management of autism spectrum disorder?. Despite being a signatory of the resolution, South Africa does not have any national policies to guide the management of autism spectrum disorder services. This study explored the perspectives of key government stakeholders on educational and other services for children with autism spectrum disorder in the Western Cape Province of South Africa and their proposed solutions to meet the needs of autistic children and their families. The overarching theme that emerged was ?We are doing damage control?. Government stakeholders acknowledged that autism spectrum disorder services were falling between the ?cracks? caused by competing societal demands on government resources. Participants shared perspectives about autism spectrum disorder services in three categories: a cracked society, siloed service systems and gap-filling strategies. Findings from this study highlighted the need for collaborative efforts between government departments and civil society to develop a strategy for autism spectrum disorder in line with the World Health Organization resolution. Multistakeholder engagement to break down barriers, strengthen systems and develop innovative solutions to improving services for children with autism spectrum disorder and their families is recommended. Lay abstract Autism spectrum disorder is a growing public health concern in low- and middle-income countries like South Africa where there are no plans or policies in place for autism spectrum disorder management. Many children with autism spectrum disorder in South Africa are out of schools and waiting for school placement to become available. This study explored the perspectives of key government stakeholders on educational and other services for children with autism spectrum disorder in the Western Cape Province of South Africa and their suggestion for improving services for these children and their families. Semi-structured interviews were conducted with government stakeholders from the Western Cape Department of Education, Department of Health and the Department of Social development. The main theme that emerged was ?We are doing damage control?. Government stakeholders acknowledged that autism spectrum disorder services were being overlooked because of other demands on government resources. Finding from this study highlighted the need for government departments to work together to develop a strategy for autism spectrum disorder management. Engagement between government and civil society to break down barriers, strengthen systems and develop solutions to improving access to services for children with autism spectrum disorder and their families is recommended. En ligne : https://dx.doi.org/10.1177/13623613221142111 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519

Feasibility of an observational procedure to enhance early identification of autism spectrum disorder in paediatric settings: A mixed-methods study on an Ecuadorian sample / Cristina ARMIJOS ; Alfredo NARANJO ; Edouard GENTAZ in Autism, 28-1 (January 2024)  

Public ISBD [article]  inAutism > 28-1 (January 2024) . - p.84?94 Titre : Feasibility of an observational procedure to enhance early identification of autism spectrum disorder in paediatric settings: A mixed-methods study on an Ecuadorian sample Type de document : Texte imprimé et/ou numérique Auteurs : Cristina ARMIJOS, Auteur ; Alfredo NARANJO, Auteur ; Edouard GENTAZ, Auteur Article en page(s) : p.84?94 Mots-clés : autism spectrum disorder  context-dependent tasks  early identification  low- and middle-income countries  paediatric settings Index. décimale : PER Périodiques Résumé : Identification procedures for autism spectrum disorders in paediatric settings include screening and routine clinical surveillance. Screening tools are perceived as challenging, and a preference for direct observation has been reported in Ecuadorian paediatric settings. Augmentative observational procedures could prompt the application of screening tools, increase professionals? sense of self-efficacy and support referral decision-making. Following the recommendations that identification procedures should be tested in a group of children without autism from local populations, we tested a set of observational tasks on 125 children from 12 to 59?months of age in various socio-economic settings, in semi-experimental conditions and on a group of 33 non-autistic children in a paediatric-setting condition. Results indicated that the social referencing task did not produce the expected response in most children in semi-experimental conditions. Responses to the elicitation of a gesture were significantly influenced by socio-economic status and geographic area. Three other tested tasks (response to name, eye contact, response to joint attention) produced the expected responses in semi-experimental and clinical conditions, suggesting that they could be used in daily routines if fidelity to training is ensured. We discuss the implication of those findings in clinical practice and professional education in an Ecuadorian context. Lay abstract In Ecuador, the low official estimate of the number of persons with autism spectrum disorder suggest that many children are not identified and are not receiving support. Screening tools are short parent-addressed questionnaires used to identify children that may be developing with autism. Their use is recommended, but their application can be perceived as challenging in paediatric routines. Some professionals prefer looking for autism-related behaviours in a child rather than using screening questionnaires. Although a short observation does not replace the use of validated screening questionnaires, tasks to guide the observation of autistic early signs can help professionals decide to screen or refer the family for assessment and early intervention. In this study, we tested observational tasks that could be adapted to the Ecuadorian paediatric contexts. En ligne : https://dx.doi.org/10.1177/13623613231175587 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519 [article] Feasibility of an observational procedure to enhance early identification of autism spectrum disorder in paediatric settings: A mixed-methods study on an Ecuadorian sample [Texte imprimé et/ou numérique] / Cristina ARMIJOS, Auteur ; Alfredo NARANJO, Auteur ; Edouard GENTAZ, Auteur . - p.84?94. in Autism > 28-1 (January 2024) . - p.84?94 Mots-clés : autism spectrum disorder  context-dependent tasks  early identification  low- and middle-income countries  paediatric settings Index. décimale : PER Périodiques Résumé : Identification procedures for autism spectrum disorders in paediatric settings include screening and routine clinical surveillance. Screening tools are perceived as challenging, and a preference for direct observation has been reported in Ecuadorian paediatric settings. Augmentative observational procedures could prompt the application of screening tools, increase professionals? sense of self-efficacy and support referral decision-making. Following the recommendations that identification procedures should be tested in a group of children without autism from local populations, we tested a set of observational tasks on 125 children from 12 to 59?months of age in various socio-economic settings, in semi-experimental conditions and on a group of 33 non-autistic children in a paediatric-setting condition. Results indicated that the social referencing task did not produce the expected response in most children in semi-experimental conditions. Responses to the elicitation of a gesture were significantly influenced by socio-economic status and geographic area. Three other tested tasks (response to name, eye contact, response to joint attention) produced the expected responses in semi-experimental and clinical conditions, suggesting that they could be used in daily routines if fidelity to training is ensured. We discuss the implication of those findings in clinical practice and professional education in an Ecuadorian context. Lay abstract In Ecuador, the low official estimate of the number of persons with autism spectrum disorder suggest that many children are not identified and are not receiving support. Screening tools are short parent-addressed questionnaires used to identify children that may be developing with autism. Their use is recommended, but their application can be perceived as challenging in paediatric routines. Some professionals prefer looking for autism-related behaviours in a child rather than using screening questionnaires. Although a short observation does not replace the use of validated screening questionnaires, tasks to guide the observation of autistic early signs can help professionals decide to screen or refer the family for assessment and early intervention. In this study, we tested observational tasks that could be adapted to the Ecuadorian paediatric contexts. En ligne : https://dx.doi.org/10.1177/13623613231175587 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519

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

Urban and rural differences in needs, service use and satisfaction among caregivers of autistic children in Morocco / Mohamed BOUTJDIR ; Tahar EL-KORCHI ; Hafida TORRES ; Arun KARPUR ; Andy SHIH ; Abdeslem ELIDRISSI in Autism, 28-1 (January 2024)  

Public ISBD [article]  inAutism > 28-1 (January 2024) . - p.107?122 Titre : Urban and rural differences in needs, service use and satisfaction among caregivers of autistic children in Morocco Type de document : Texte imprimé et/ou numérique Auteurs : Mohamed BOUTJDIR, Auteur ; Tahar EL-KORCHI, Auteur ; Hafida TORRES, Auteur ; Arun KARPUR, Auteur ; Andy SHIH, Auteur ; Abdeslem ELIDRISSI, Auteur Article en page(s) : p.107?122 Mots-clés : autism  caregivers  low-resource area  Morocco  rural Index. décimale : PER Périodiques Résumé : Understanding caregivers? needs is crucial for service planning and empowering caregivers around the world. Although research on autism from Arab countries is emerging, many countries are still unrepresented. Moreover, within-country disparities are understudied. This study investigated differences in needs, service use, and satisfaction between urban or rural living caregivers of autistic children in Morocco. The ?Andersen Behavioral Model of Health Services Use? served as a conceptual framework to investigate factors associated with receiving intervention and service satisfaction. Results from a survey among 131 Moroccan caregivers of autistic children revealed similarities and differences in urban and rural living caregivers? challenges and needs. Children from urban communities had 12 times higher odds of receiving intervention despite similar age and verbal ability. Significantly, fewer children from rural communities attended school as compared with urban communities. Limited autonomy skills in children were more challenging to rural caregivers, while limited social-communicational skills were more challenging to urban caregivers. These differences may inform healthcare policy-makers and program developers. Adaptive interventions are important to reflect regional needs, resources, and practices. Addressing enabling factors such as costs, information barriers, or stigma may help reduce both global and within-country disparities in autism care. Lay Abstract It is very important to understand the needs of caregivers to be able to empower caregivers and to develop or improve services around the world. Therefore, research in different regions is needed to understand differences in caregivers needs between countries, but also between areas within countries. This study investigated differences in needs and service use between caregivers of autistic children in Morocco, living in urban and rural areas. A total of 131 Moroccan caregivers of autistic children took part in the study and responded to an interview survey. The results showed both similarities and differences between urban and rural living caregivers? challenges and needs. Autistic children from urban communities were much more likely to receive intervention and attend school than children from rural communities, even though age and verbal skills of the two groups of children were comparable. Caregivers expressed similar needs for improved care and education, but different challenges in caring. Limited autonomy skills in children were more challenging to rural caregivers, while limited social-communicational skills were more challenging to urban caregivers. These differences may inform healthcare policy-makers and program developers. Adaptive interventions are important to respond to regional needs, resources, and practices. In addition, the results showed the importance of addressing challenges as experienced by caregivers such as costs related to care, barriers in access to information, or stigma. Addressing these issues may help reduce both global and within-country differences in autism care. En ligne : https://dx.doi.org/10.1177/13623613221150086 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519 [article] Urban and rural differences in needs, service use and satisfaction among caregivers of autistic children in Morocco [Texte imprimé et/ou numérique] / Mohamed BOUTJDIR, Auteur ; Tahar EL-KORCHI, Auteur ; Hafida TORRES, Auteur ; Arun KARPUR, Auteur ; Andy SHIH, Auteur ; Abdeslem ELIDRISSI, Auteur . - p.107?122. in Autism > 28-1 (January 2024) . - p.107?122 Mots-clés : autism  caregivers  low-resource area  Morocco  rural Index. décimale : PER Périodiques Résumé : Understanding caregivers? needs is crucial for service planning and empowering caregivers around the world. Although research on autism from Arab countries is emerging, many countries are still unrepresented. Moreover, within-country disparities are understudied. This study investigated differences in needs, service use, and satisfaction between urban or rural living caregivers of autistic children in Morocco. The ?Andersen Behavioral Model of Health Services Use? served as a conceptual framework to investigate factors associated with receiving intervention and service satisfaction. Results from a survey among 131 Moroccan caregivers of autistic children revealed similarities and differences in urban and rural living caregivers? challenges and needs. Children from urban communities had 12 times higher odds of receiving intervention despite similar age and verbal ability. Significantly, fewer children from rural communities attended school as compared with urban communities. Limited autonomy skills in children were more challenging to rural caregivers, while limited social-communicational skills were more challenging to urban caregivers. These differences may inform healthcare policy-makers and program developers. Adaptive interventions are important to reflect regional needs, resources, and practices. Addressing enabling factors such as costs, information barriers, or stigma may help reduce both global and within-country disparities in autism care. Lay Abstract It is very important to understand the needs of caregivers to be able to empower caregivers and to develop or improve services around the world. Therefore, research in different regions is needed to understand differences in caregivers needs between countries, but also between areas within countries. This study investigated differences in needs and service use between caregivers of autistic children in Morocco, living in urban and rural areas. A total of 131 Moroccan caregivers of autistic children took part in the study and responded to an interview survey. The results showed both similarities and differences between urban and rural living caregivers? challenges and needs. Autistic children from urban communities were much more likely to receive intervention and attend school than children from rural communities, even though age and verbal skills of the two groups of children were comparable. Caregivers expressed similar needs for improved care and education, but different challenges in caring. Limited autonomy skills in children were more challenging to rural caregivers, while limited social-communicational skills were more challenging to urban caregivers. These differences may inform healthcare policy-makers and program developers. Adaptive interventions are important to respond to regional needs, resources, and practices. In addition, the results showed the importance of addressing challenges as experienced by caregivers such as costs related to care, barriers in access to information, or stigma. Addressing these issues may help reduce both global and within-country differences in autism care. En ligne : https://dx.doi.org/10.1177/13623613221150086 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519

Acceptability and feasibility of a parent-mediated social-communication therapy for young autistic children in Brazil: A qualitative implementation study of Paediatric Autism Communication Therapy / Lorna MCWILLIAMS ; Leticia RODRIGUES DA SILVEIRA ; Mirian DE CESARO REVERS BIASÃO ; Fernanda SPEGGIORIN PEREIRA ALARCÃO ; Leonardo SEDA ; Renata GENEROSO CAMPOLI ; Holan LIANG ; Gauri DIVAN ; Kathy LEADBITTER in Autism, 28-1 (January 2024)  

Public ISBD [article]  inAutism > 28-1 (January 2024) . - p.123?137 Titre : Acceptability and feasibility of a parent-mediated social-communication therapy for young autistic children in Brazil: A qualitative implementation study of Paediatric Autism Communication Therapy Type de document : Texte imprimé et/ou numérique Auteurs : Lorna MCWILLIAMS, Auteur ; Leticia RODRIGUES DA SILVEIRA, Auteur ; Mirian DE CESARO REVERS BIASÃO, Auteur ; Fernanda SPEGGIORIN PEREIRA ALARCÃO, Auteur ; Leonardo SEDA, Auteur ; Renata GENEROSO CAMPOLI, Auteur ; Holan LIANG, Auteur ; Gauri DIVAN, Auteur ; Kathy LEADBITTER, Auteur Article en page(s) : p.123?137 Mots-clés : autism  Brazil  implementation study  Paediatric Autism Communication Therapy  qualitative study Index. décimale : PER Périodiques Résumé : Effective support for autistic individuals is lacking in Brazil. Few centres offer services and those that do are limited in therapeutic options and geographical location. Paediatric Autism Communication Therapy is a low-intensity, evidence-based parent-mediated social-communication intervention that may be useful for this scenario. This implementation study aimed to assess the acceptability and feasibility of Paediatric Autism Communication Therapy for young autistic children (aged 2?10?years) in Brazil. Parents (n?=?18) of 2- to 10-year-old autistic children and clinicians (n?=?20) who work with autistic children in Brazil were interviewed and the data analysed using thematic analysis to explore their perceptions concerning the acceptability and feasibility of Paediatric Autism Communication Therapy. In addition, Paediatric Autism Communication Therapy was delivered to a case series of 15 further parent?child dyads; these parents were interviewed at the end of the therapy, and the data were analysed using thematic analysis. All parents and clinicians had favourable opinions about the acceptability, feasibility and perceived effectiveness of a parent-mediated intervention conducted mainly in the home. However, they also highlighted obstacles concerning the implementation of Paediatric Autism Communication Therapy in Brazil, especially related to engaging Brazilian parents in a parent-mediated model of therapy. Based on these data, minor adaptations were made to the original Paediatric Autism Communication Therapy protocol to facilitate the implementation of the intervention in Brazil. Lay abstract Parents of autistic children and health professionals who work with autistic children in Brazil had positive views about introducing Paediatric Autism Communication Therapy as a therapy for autistic children in Brazil. The parents and clinicians also mentioned some difficulties about using Paediatric Autism Communication Therapy in Brazil. We made adaptations to Paediatric Autism Communication Therapy to address these difficulties. Paediatric Autism Communication Therapy is a therapy to support the development of social and communication skills for autistic children aged 2?10 years. The therapy is conducted with the autistic child?s parent. Paediatric Autism Communication Therapy has not been used in Brazil before. There are few therapy options available for autistic children in Brazil and we believed that Paediatric Autism Communication Therapy may be useful. We asked three groups of people in Brazil about their views of Paediatric Autism Communication Therapy, after explaining how the therapy works. Group 1 included 18 parents of autistic children aged 2?10 years. Group 2 included 20 health professionals such as psychologists who work with autistic children. Group 3 included 15 parents of autistic children aged 2?7 years who received the Paediatric Autism Communication Therapy. We learned that parents and clinicians felt that Paediatric Autism Communication Therapy would be a beneficial therapy for autistic children in Brazil. We also found out about the challenges of using Paediatric Autism Communication Therapy in Brazil. We used these findings to make small cultural adaptations to Paediatric Autism Communication Therapy to make it more suitable for Brazil. En ligne : https://dx.doi.org/10.1177/13623613221144501 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519 [article] Acceptability and feasibility of a parent-mediated social-communication therapy for young autistic children in Brazil: A qualitative implementation study of Paediatric Autism Communication Therapy [Texte imprimé et/ou numérique] / Lorna MCWILLIAMS, Auteur ; Leticia RODRIGUES DA SILVEIRA, Auteur ; Mirian DE CESARO REVERS BIASÃO, Auteur ; Fernanda SPEGGIORIN PEREIRA ALARCÃO, Auteur ; Leonardo SEDA, Auteur ; Renata GENEROSO CAMPOLI, Auteur ; Holan LIANG, Auteur ; Gauri DIVAN, Auteur ; Kathy LEADBITTER, Auteur . - p.123?137. in Autism > 28-1 (January 2024) . - p.123?137 Mots-clés : autism  Brazil  implementation study  Paediatric Autism Communication Therapy  qualitative study Index. décimale : PER Périodiques Résumé : Effective support for autistic individuals is lacking in Brazil. Few centres offer services and those that do are limited in therapeutic options and geographical location. Paediatric Autism Communication Therapy is a low-intensity, evidence-based parent-mediated social-communication intervention that may be useful for this scenario. This implementation study aimed to assess the acceptability and feasibility of Paediatric Autism Communication Therapy for young autistic children (aged 2?10?years) in Brazil. Parents (n?=?18) of 2- to 10-year-old autistic children and clinicians (n?=?20) who work with autistic children in Brazil were interviewed and the data analysed using thematic analysis to explore their perceptions concerning the acceptability and feasibility of Paediatric Autism Communication Therapy. In addition, Paediatric Autism Communication Therapy was delivered to a case series of 15 further parent?child dyads; these parents were interviewed at the end of the therapy, and the data were analysed using thematic analysis. All parents and clinicians had favourable opinions about the acceptability, feasibility and perceived effectiveness of a parent-mediated intervention conducted mainly in the home. However, they also highlighted obstacles concerning the implementation of Paediatric Autism Communication Therapy in Brazil, especially related to engaging Brazilian parents in a parent-mediated model of therapy. Based on these data, minor adaptations were made to the original Paediatric Autism Communication Therapy protocol to facilitate the implementation of the intervention in Brazil. Lay abstract Parents of autistic children and health professionals who work with autistic children in Brazil had positive views about introducing Paediatric Autism Communication Therapy as a therapy for autistic children in Brazil. The parents and clinicians also mentioned some difficulties about using Paediatric Autism Communication Therapy in Brazil. We made adaptations to Paediatric Autism Communication Therapy to address these difficulties. Paediatric Autism Communication Therapy is a therapy to support the development of social and communication skills for autistic children aged 2?10 years. The therapy is conducted with the autistic child?s parent. Paediatric Autism Communication Therapy has not been used in Brazil before. There are few therapy options available for autistic children in Brazil and we believed that Paediatric Autism Communication Therapy may be useful. We asked three groups of people in Brazil about their views of Paediatric Autism Communication Therapy, after explaining how the therapy works. Group 1 included 18 parents of autistic children aged 2?10 years. Group 2 included 20 health professionals such as psychologists who work with autistic children. Group 3 included 15 parents of autistic children aged 2?7 years who received the Paediatric Autism Communication Therapy. We learned that parents and clinicians felt that Paediatric Autism Communication Therapy would be a beneficial therapy for autistic children in Brazil. We also found out about the challenges of using Paediatric Autism Communication Therapy in Brazil. We used these findings to make small cultural adaptations to Paediatric Autism Communication Therapy to make it more suitable for Brazil. En ligne : https://dx.doi.org/10.1177/13623613221144501 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519

Autism spectrum disorder among 16- to 30-month-old children in Bangladesh: Observational cross-sectional study / Jannatara SHEFA ; Mohammad Abdul QUADER ; Khurshid TALUKDER ; AHM Enayet HUSSAIN ; Gopen Kumar KUNDU ; Kanij FATEMA ; Sayeda Tabassum ALAM ; Kazi Ashraful ISLAM ; Sayedur RAHMAN in Autism, 28-1 (January 2024)  

Public ISBD [article]  inAutism > 28-1 (January 2024) . - p.138?148 Titre : Autism spectrum disorder among 16- to 30-month-old children in Bangladesh: Observational cross-sectional study Type de document : Texte imprimé et/ou numérique Auteurs : Jannatara SHEFA, Auteur ; Mohammad Abdul QUADER, Auteur ; Khurshid TALUKDER, Auteur ; AHM Enayet HUSSAIN, Auteur ; Gopen Kumar KUNDU, Auteur ; Kanij FATEMA, Auteur ; Sayeda Tabassum ALAM, Auteur ; Kazi Ashraful ISLAM, Auteur ; Sayedur RAHMAN, Auteur Article en page(s) : p.138?148 Mots-clés : autism spectrum disorders  pre-school children  prevalence Index. décimale : PER Périodiques Résumé : Autism spectrum disorder is a developmental disorder that includes deficits in social communication and interaction, and restricted and repetitive behaviours, interests, or activities. This survey was done to assess autism spectrum disorder prevalence in 16- to 30-month-old children at an urban?rural distribution and determine the association of socioeconomic and demographic conditions. An observational cross-sectional study was conducted in 30 districts of Bangladesh. Three-stage cluster sampling was used with ?Red Flag?, Modified Checklist for Toddlers and Diagnostic and Statistical Manual of Mental Disorders, 5th Edition, respectively. Data editing and analysis were done using CSPro 6 and SPSS 23. The survey included 37,982 households (71% rural, 29% urban) with 38,440 children. ?Red Flag? was positive in 209/10,000 children. Modified Checklist for Toddlers was positive in 149/10,000 children. Diagnostic and Statistical Manual of Mental Disorders, 5th Edition?positive autism spectrum disorder prevalence was 17/10,000 young children (boys 24/10,000, girls 9.8/10,000). Prevalence was higher in urban than rural (25/10,000 and 14/10,000 respectively). It was 77/10,000 in mothers aged 35?39?years and 23/10,000 in children of fathers aged 40?years. For families within the lowest wealth quintile, the autism spectrum disorder prevalence was 15/10,000. Autism spectrum disorder at very young ages in Bangladesh is still low. It was higher in urban areas, with the advanced age of parents, especially mothers, and in families with higher wealth quintiles. Lay abstract A nationwide survey was done in Bangladesh to assess autism spectrum disorder prevalence in 16- to 30-month-old children at urban?rural distribution and to determine the association with socioeconomic and demographic conditions. A three-stage cluster sampling method was used where districts from all divisions were selected in the first stage, census enumeration areas as blocks of households were selected in the second stage and households (within the blocks) were selected in the third stage. Thereby, it included 38,440 children from 37,982 households (71% rural, 29% urban) aged 16?30?months from 30 districts of eight divisions of Bangladesh. Screening was done with a ?Red Flag? tool and Modified Checklist for Toddlers and a final diagnosis using Diagnostic and Statistical Manual of Mental Disorders, 5th Edition for autism spectrum disorder. Autism spectrum disorder prevalence was 17 per 10,000 young children ? in other words, one in 589 young children. Boys were found at higher risk of autism (one in 423 boys; one in 1026 girls). Prevalence of autism spectrum disorder was higher in urban environments than in rural ones ? 25/10,000 and 14/10,000, respectively. More autism spectrum disorder children were found in advanced age groups of parents, especially mothers, and in households with a higher wealth quintile. This survey is significant as it covers both urban and rural areas and specifically targets very young children. The involvement of the Bangladesh Bureau of Statistics, as well as support from the entire healthcare system infrastructure, makes this survey more representative on a national level. Its results will form a database to support the development of an effective early intervention programme in Bangladesh. We hope it will prove useful for researchers, clinicians and frontline healthcare workers, and inform the decisions of policymakers and funders in Bangladesh. En ligne : https://dx.doi.org/10.1177/13623613221135297 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519 [article] Autism spectrum disorder among 16- to 30-month-old children in Bangladesh: Observational cross-sectional study [Texte imprimé et/ou numérique] / Jannatara SHEFA, Auteur ; Mohammad Abdul QUADER, Auteur ; Khurshid TALUKDER, Auteur ; AHM Enayet HUSSAIN, Auteur ; Gopen Kumar KUNDU, Auteur ; Kanij FATEMA, Auteur ; Sayeda Tabassum ALAM, Auteur ; Kazi Ashraful ISLAM, Auteur ; Sayedur RAHMAN, Auteur . - p.138?148. in Autism > 28-1 (January 2024) . - p.138?148 Mots-clés : autism spectrum disorders  pre-school children  prevalence Index. décimale : PER Périodiques Résumé : Autism spectrum disorder is a developmental disorder that includes deficits in social communication and interaction, and restricted and repetitive behaviours, interests, or activities. This survey was done to assess autism spectrum disorder prevalence in 16- to 30-month-old children at an urban?rural distribution and determine the association of socioeconomic and demographic conditions. An observational cross-sectional study was conducted in 30 districts of Bangladesh. Three-stage cluster sampling was used with ?Red Flag?, Modified Checklist for Toddlers and Diagnostic and Statistical Manual of Mental Disorders, 5th Edition, respectively. Data editing and analysis were done using CSPro 6 and SPSS 23. The survey included 37,982 households (71% rural, 29% urban) with 38,440 children. ?Red Flag? was positive in 209/10,000 children. Modified Checklist for Toddlers was positive in 149/10,000 children. Diagnostic and Statistical Manual of Mental Disorders, 5th Edition?positive autism spectrum disorder prevalence was 17/10,000 young children (boys 24/10,000, girls 9.8/10,000). Prevalence was higher in urban than rural (25/10,000 and 14/10,000 respectively). It was 77/10,000 in mothers aged 35?39?years and 23/10,000 in children of fathers aged 40?years. For families within the lowest wealth quintile, the autism spectrum disorder prevalence was 15/10,000. Autism spectrum disorder at very young ages in Bangladesh is still low. It was higher in urban areas, with the advanced age of parents, especially mothers, and in families with higher wealth quintiles. Lay abstract A nationwide survey was done in Bangladesh to assess autism spectrum disorder prevalence in 16- to 30-month-old children at urban?rural distribution and to determine the association with socioeconomic and demographic conditions. A three-stage cluster sampling method was used where districts from all divisions were selected in the first stage, census enumeration areas as blocks of households were selected in the second stage and households (within the blocks) were selected in the third stage. Thereby, it included 38,440 children from 37,982 households (71% rural, 29% urban) aged 16?30?months from 30 districts of eight divisions of Bangladesh. Screening was done with a ?Red Flag? tool and Modified Checklist for Toddlers and a final diagnosis using Diagnostic and Statistical Manual of Mental Disorders, 5th Edition for autism spectrum disorder. Autism spectrum disorder prevalence was 17 per 10,000 young children ? in other words, one in 589 young children. Boys were found at higher risk of autism (one in 423 boys; one in 1026 girls). Prevalence of autism spectrum disorder was higher in urban environments than in rural ones ? 25/10,000 and 14/10,000, respectively. More autism spectrum disorder children were found in advanced age groups of parents, especially mothers, and in households with a higher wealth quintile. This survey is significant as it covers both urban and rural areas and specifically targets very young children. The involvement of the Bangladesh Bureau of Statistics, as well as support from the entire healthcare system infrastructure, makes this survey more representative on a national level. Its results will form a database to support the development of an effective early intervention programme in Bangladesh. We hope it will prove useful for researchers, clinicians and frontline healthcare workers, and inform the decisions of policymakers and funders in Bangladesh. En ligne : https://dx.doi.org/10.1177/13623613221135297 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519

Brief report: Evaluation of an adapted youth version of Parents Taking Action for parents of pre/adolescents with autism spectrum disorder in Colombia / Sandy MAGAÑA ; Fabricio BALCAZAR in Autism, 28-1 (January 2024)  

Public ISBD [article]  inAutism > 28-1 (January 2024) . - p.149?154 Titre : Brief report: Evaluation of an adapted youth version of Parents Taking Action for parents of pre/adolescents with autism spectrum disorder in Colombia Type de document : Texte imprimé et/ou numérique Auteurs : Sandy MAGAÑA, Auteur ; Fabricio BALCAZAR, Auteur Article en page(s) : p.149?154 Mots-clés : adolescents  autism spectrum disorders  Colombian families  Latino  parent education  preadolescents with autism spectrum disorder  puberty  sexuality Index. décimale : PER Périodiques Résumé : The aim of this study was to evaluate the efficacy of the youth version of the program Parents Taking Action in Bogota, Colombia, using a quasi-experimental design. We hypothesized that parents in the treatment groups would improve in levels of knowledge, empowerment, self-efficacy, and use of strategies related to topics of adolescence and sexuality compared to the control group. We recruited 25 Colombian parents of pre/adolescent youth with autism spectrum disorder between the ages of 10 and 17 in Bogota. The intervention included four weekly sessions in which the new content about sexuality and adolescence was delivered. Twelve parents were in the intervention group and 13 were in the control group. Intervention participants significantly improved in Knowledge (t?=?4.37 p? En ligne : https://dx.doi.org/10.1177/13623613231155773 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519 [article] Brief report: Evaluation of an adapted youth version of Parents Taking Action for parents of pre/adolescents with autism spectrum disorder in Colombia [Texte imprimé et/ou numérique] / Sandy MAGAÑA, Auteur ; Fabricio BALCAZAR, Auteur . - p.149?154. in Autism > 28-1 (January 2024) . - p.149?154 Mots-clés : adolescents  autism spectrum disorders  Colombian families  Latino  parent education  preadolescents with autism spectrum disorder  puberty  sexuality Index. décimale : PER Périodiques Résumé : The aim of this study was to evaluate the efficacy of the youth version of the program Parents Taking Action in Bogota, Colombia, using a quasi-experimental design. We hypothesized that parents in the treatment groups would improve in levels of knowledge, empowerment, self-efficacy, and use of strategies related to topics of adolescence and sexuality compared to the control group. We recruited 25 Colombian parents of pre/adolescent youth with autism spectrum disorder between the ages of 10 and 17 in Bogota. The intervention included four weekly sessions in which the new content about sexuality and adolescence was delivered. Twelve parents were in the intervention group and 13 were in the control group. Intervention participants significantly improved in Knowledge (t?=?4.37 p? En ligne : https://dx.doi.org/10.1177/13623613231155773 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519

A short report on a preliminary interventional study to evaluate play-mediated interaction skills in caregivers of children with autism spectrum disorder from Sri Lanka / Samanmali P. SUMANASENA in Autism, 28-1 (January 2024)  

Public ISBD [article]  inAutism > 28-1 (January 2024) . - p.155?161 Titre : A short report on a preliminary interventional study to evaluate play-mediated interaction skills in caregivers of children with autism spectrum disorder from Sri Lanka Type de document : Texte imprimé et/ou numérique Auteurs : Samanmali P. SUMANASENA, Auteur Article en page(s) : p.155?161 Mots-clés : autism spectrum disorders  caregiver?child interaction skills assessment  low- and middle-income countries  parent-mediated interventions  play-based parent coaching programme  play-mediated interaction skills in caregivers  social-emotional  video monitoring Index. décimale : PER Périodiques Résumé : Caregivers are increasingly recognised as significant in providing naturalistic interventions for children with autism spectrum disorder in high-income countries and low- and middle-income countries including Sri Lanka. It is imperative to assess the impact of programmes targeting desired parenting skills within cultural boundaries. A preliminary study evaluated the effectiveness of a play-based parent coaching programme by assessing caregiver interaction skills. A mixed-method approach included a prospective pre?post interventional study. A caregiver skills assessment checklist was designed by adapting a freely available tool to assess caregiver?child interactions following a 3-h parent coaching programme. Pre-/post-training 10-min video recordings were obtained for each child?caregiver dyad 2?weeks apart. Thirty mothers (25?55?years) participated. Mean scores improved significantly in all caregivers (p? En ligne : https://dx.doi.org/10.1177/13623613231211370 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519 [article] A short report on a preliminary interventional study to evaluate play-mediated interaction skills in caregivers of children with autism spectrum disorder from Sri Lanka [Texte imprimé et/ou numérique] / Samanmali P. SUMANASENA, Auteur . - p.155?161. in Autism > 28-1 (January 2024) . - p.155?161 Mots-clés : autism spectrum disorders  caregiver?child interaction skills assessment  low- and middle-income countries  parent-mediated interventions  play-based parent coaching programme  play-mediated interaction skills in caregivers  social-emotional  video monitoring Index. décimale : PER Périodiques Résumé : Caregivers are increasingly recognised as significant in providing naturalistic interventions for children with autism spectrum disorder in high-income countries and low- and middle-income countries including Sri Lanka. It is imperative to assess the impact of programmes targeting desired parenting skills within cultural boundaries. A preliminary study evaluated the effectiveness of a play-based parent coaching programme by assessing caregiver interaction skills. A mixed-method approach included a prospective pre?post interventional study. A caregiver skills assessment checklist was designed by adapting a freely available tool to assess caregiver?child interactions following a 3-h parent coaching programme. Pre-/post-training 10-min video recordings were obtained for each child?caregiver dyad 2?weeks apart. Thirty mothers (25?55?years) participated. Mean scores improved significantly in all caregivers (p? En ligne : https://dx.doi.org/10.1177/13623613231211370 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519

Strategies for capacity building in a low-resource setting: Stakeholders? voices / Hedda MEADAN ; Enkhjin OYUNBAATAR ; Amarbuyan AMAR in Autism, 28-1 (January 2024)  

Public ISBD [article]  inAutism > 28-1 (January 2024) . - p.162?173 Titre : Strategies for capacity building in a low-resource setting: Stakeholders? voices Type de document : Texte imprimé et/ou numérique Auteurs : Hedda MEADAN, Auteur ; Enkhjin OYUNBAATAR, Auteur ; Amarbuyan AMAR, Auteur Article en page(s) : p.162?173 Mots-clés : capacity building  community academic partnership  strategies Index. décimale : PER Périodiques Résumé : Although global prevalence of autism has grown substantially, researchers still report inequity in access to evidence-based interventions in many low-resource settings where majority of world?s children live. Capacity building of diverse stakeholders in low-resource settings has been suggested to be a potential way to mitigate low levels of access to resources; however, little is known about what these stakeholders consider as helpful strategies in capacity building. In this qualitative research, we conducted five focus groups with 30 Mongolian caregivers of children with autism and 15 individual interviews with professionals in Mongolia. Three themes emerged from this study, including (a) partnership, (b) advocacy, and (c) empowerment. Each theme also contained several categories. For example, partnerships included enhancing collaboration among stakeholders and collaboration with international development agencies; advocacy included parental and legislative advocacy; and empowerment included training for diverse stakeholders, including caregivers and professionals. Implications and directions for future research are also suggested. Lay abstract Prevalence of autism is increasing all around the globe, but there is still great inequity in accessing evidence-based interventions. Although the field of autism research has made great strides in identifying and establishing evidence-based interventions, dissemination and implementation of these interventions have been reported as inequitable. This inequity is especially highlighted in many low-resource settings, such as Mongolia. As a field, there is still much to be learned about what strategies are used by stakeholders in low-resource settings to build capacity and to mitigate the hardships. To gain a deeper understanding of strategies for capacity building within a low-resource setting, we conducted five focus groups with 30 Mongolian caregivers of children with autism and 15 individual interviews with various professionals who work in Mongolia. These stakeholders reported three main strategies, including (a) partnership, (b) advocacy, and (c) empowerment, which included several strategies and implications on capacity-building practices. Furthermore, the findings from this study may suggest important implications for future intervention research. En ligne : https://dx.doi.org/10.1177/13623613221127077 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519 [article] Strategies for capacity building in a low-resource setting: Stakeholders? voices [Texte imprimé et/ou numérique] / Hedda MEADAN, Auteur ; Enkhjin OYUNBAATAR, Auteur ; Amarbuyan AMAR, Auteur . - p.162?173. in Autism > 28-1 (January 2024) . - p.162?173 Mots-clés : capacity building  community academic partnership  strategies Index. décimale : PER Périodiques Résumé : Although global prevalence of autism has grown substantially, researchers still report inequity in access to evidence-based interventions in many low-resource settings where majority of world?s children live. Capacity building of diverse stakeholders in low-resource settings has been suggested to be a potential way to mitigate low levels of access to resources; however, little is known about what these stakeholders consider as helpful strategies in capacity building. In this qualitative research, we conducted five focus groups with 30 Mongolian caregivers of children with autism and 15 individual interviews with professionals in Mongolia. Three themes emerged from this study, including (a) partnership, (b) advocacy, and (c) empowerment. Each theme also contained several categories. For example, partnerships included enhancing collaboration among stakeholders and collaboration with international development agencies; advocacy included parental and legislative advocacy; and empowerment included training for diverse stakeholders, including caregivers and professionals. Implications and directions for future research are also suggested. Lay abstract Prevalence of autism is increasing all around the globe, but there is still great inequity in accessing evidence-based interventions. Although the field of autism research has made great strides in identifying and establishing evidence-based interventions, dissemination and implementation of these interventions have been reported as inequitable. This inequity is especially highlighted in many low-resource settings, such as Mongolia. As a field, there is still much to be learned about what strategies are used by stakeholders in low-resource settings to build capacity and to mitigate the hardships. To gain a deeper understanding of strategies for capacity building within a low-resource setting, we conducted five focus groups with 30 Mongolian caregivers of children with autism and 15 individual interviews with various professionals who work in Mongolia. These stakeholders reported three main strategies, including (a) partnership, (b) advocacy, and (c) empowerment, which included several strategies and implications on capacity-building practices. Furthermore, the findings from this study may suggest important implications for future intervention research. En ligne : https://dx.doi.org/10.1177/13623613221127077 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519

Self-reported autistic traits and psychosocial outcomes among university students in Malaysia / Mohd Syazwan ZAINAL ; Jee Ching PANG ; Yammy ANG ; Marieke DE VRIES in Autism, 28-1 (January 2024)  

Public ISBD [article]  inAutism > 28-1 (January 2024) . - p.174?186 Titre : Self-reported autistic traits and psychosocial outcomes among university students in Malaysia Type de document : Texte imprimé et/ou numérique Auteurs : Mohd Syazwan ZAINAL, Auteur ; Jee Ching PANG, Auteur ; Yammy ANG, Auteur ; Marieke DE VRIES, Auteur Article en page(s) : p.174?186 Mots-clés : autism spectrum condition  prevalence  psychosocial outcomes  university students Index. décimale : PER Périodiques Résumé : An autism spectrum condition is considered a lifelong condition. Affected individuals typically experience poorer psychosocial outcomes compared to non-autistic individuals. However, in Southeast Asian countries such as Malaysia, research about autism spectrum conditions beyond the early childhood context is scarce, and therefore, the prevalence and psychosocial outcomes of young adults with autism spectrum conditions remain largely unknown. This study aims to explore self-reported autistic traits among university students in Malaysia, and their relation to emotion regulation, stress, self-efficacy and quality of life. Data from 2732 students revealed that 0.3% of the students reported having an autism spectrum condition diagnosis, while 2.5% reported that they suspected having an autism spectrum condition, but did not obtain a formal diagnosis. This indicates that an estimated 2.8% of students might have a diagnosed or suspected autism spectrum condition. These two categories of students were found to have poorer self-efficacy, higher perceived stress and poorer quality of life, as compared to their peers. However, these students were not significantly different from their peers in emotion regulation. Overall, the findings pointed to negative psychosocial outcomes associated with autism spectrum condition and culture-specific associations between autistic traits and psychosocial outcomes. Lay abstract Most research on autism spectrum conditions is done on young children and not as much on young adults with autism spectrum conditions. Because of this, not much is known about how common autism spectrum conditions are in young adults and how they affect their mental and social health, especially in Southeast Asia. Based on self-reports, 2.8% of the 2732 university students we looked at in Malaysia might have been diagnosed or thought to have an autism spectrum condition. Students who said they had or thought they had autism spectrum conditions had lower self-efficacy, more stress and a lower quality of life than students who said they did not have autism spectrum conditions. The results showed that university students with autism spectrum condition are more likely to have bad psychological and social outcomes than their peers without autism spectrum condition. Also, the link between autistic traits and psychosocial outcomes could depend on the culture. En ligne : https://dx.doi.org/10.1177/13623613231167501 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519 [article] Self-reported autistic traits and psychosocial outcomes among university students in Malaysia [Texte imprimé et/ou numérique] / Mohd Syazwan ZAINAL, Auteur ; Jee Ching PANG, Auteur ; Yammy ANG, Auteur ; Marieke DE VRIES, Auteur . - p.174?186. in Autism > 28-1 (January 2024) . - p.174?186 Mots-clés : autism spectrum condition  prevalence  psychosocial outcomes  university students Index. décimale : PER Périodiques Résumé : An autism spectrum condition is considered a lifelong condition. Affected individuals typically experience poorer psychosocial outcomes compared to non-autistic individuals. However, in Southeast Asian countries such as Malaysia, research about autism spectrum conditions beyond the early childhood context is scarce, and therefore, the prevalence and psychosocial outcomes of young adults with autism spectrum conditions remain largely unknown. This study aims to explore self-reported autistic traits among university students in Malaysia, and their relation to emotion regulation, stress, self-efficacy and quality of life. Data from 2732 students revealed that 0.3% of the students reported having an autism spectrum condition diagnosis, while 2.5% reported that they suspected having an autism spectrum condition, but did not obtain a formal diagnosis. This indicates that an estimated 2.8% of students might have a diagnosed or suspected autism spectrum condition. These two categories of students were found to have poorer self-efficacy, higher perceived stress and poorer quality of life, as compared to their peers. However, these students were not significantly different from their peers in emotion regulation. Overall, the findings pointed to negative psychosocial outcomes associated with autism spectrum condition and culture-specific associations between autistic traits and psychosocial outcomes. Lay abstract Most research on autism spectrum conditions is done on young children and not as much on young adults with autism spectrum conditions. Because of this, not much is known about how common autism spectrum conditions are in young adults and how they affect their mental and social health, especially in Southeast Asia. Based on self-reports, 2.8% of the 2732 university students we looked at in Malaysia might have been diagnosed or thought to have an autism spectrum condition. Students who said they had or thought they had autism spectrum conditions had lower self-efficacy, more stress and a lower quality of life than students who said they did not have autism spectrum conditions. The results showed that university students with autism spectrum condition are more likely to have bad psychological and social outcomes than their peers without autism spectrum condition. Also, the link between autistic traits and psychosocial outcomes could depend on the culture. En ligne : https://dx.doi.org/10.1177/13623613231167501 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519

Autism community priorities in diverse low-resource settings: A country-wide scoping exercise in India / Sreerupa CHAKRABARTY ; Rajanya NANDI ; Rakshita SHEKHAR ; Sakhi SINGHI ; Shoba NAYAR ; Jai Ranjan RAM ; Shaneel MUKERJI ; Bhismadev CHAKRABARTI in Autism, 28-1 (January 2024)  

Public ISBD [article]  inAutism > 28-1 (January 2024) . - p.187?198 Titre : Autism community priorities in diverse low-resource settings: A country-wide scoping exercise in India Type de document : Texte imprimé et/ou numérique Auteurs : Sreerupa CHAKRABARTY, Auteur ; Rajanya NANDI, Auteur ; Rakshita SHEKHAR, Auteur ; Sakhi SINGHI, Auteur ; Shoba NAYAR, Auteur ; Jai Ranjan RAM, Auteur ; Shaneel MUKERJI, Auteur ; Bhismadev CHAKRABARTI, Auteur Article en page(s) : p.187?198 Mots-clés : autism spectrum disorders  global  low- and middle-income country  stakeholder consultation Index. décimale : PER Périodiques Résumé : While studies to map the priorities of the autistic community have been undertaken in some high-income countries, there has been little or no such systematic assessment in the global south. India alone is home to an estimated >5?million autistic individuals. To address this gap in the literature, this study conducted a survey of the Indian autism community on their priorities for three areas: skills training, intervention and research. Individuals with a clinical diagnosis of autism spectrum disorders and parents/guardians of autistic individuals were invited to take part in the study. Data from 280 respondents were collected online and followed up with interviews on a subset (n?=?40) chosen through stratified random selection. Results highlighted a unanimous prioritisation for self-help skills as the most important area in skills training, as it was considered the foundation for acquiring all other skills. Speech and language therapy was identified as the most important intervention for autistic individuals. Within research, identifying the most effective ways for the community to support autistic people was given the topmost priority. Researchers, clinicians and policymakers may use these insights to develop services and shape future research that is more in accord with the community?s needs. Lay abstract It is vital to directly engage with the autism community in order to develop better services and drive the research agenda. While some studies in high-income countries have mapped the priorities of the autism community, there is a severe dearth of such efforts in the global south. Five?million autistic individuals are estimated to live in India alone, and there has been little effort to map their priorities. Moreover, studies in high-income countries focused largely on research priorities, and not so much on skills training and interventions. Keeping these needs in mind, we conducted an online survey followed by an in-depth conversation with parents of autistic children and autistic adults drawn from across India. We found that the respondents reported self-help skills to be the most important for training, as they considered it fundamental for every other aspect of life. Speech and language therapy was considered to be the highest intervention priority for this group, highlighting the importance of social communication. Mental health counselling was also considered to be a high priority, but several parents identified it as being more relevant for themselves rather than for their children. Within research, the topmost priority was to understand ways in which the community can better support autistic people. We hope that these findings will help researchers, policymakers and service providers to be able to make well-informed decisions, develop relevant services and shape future research. En ligne : https://dx.doi.org/10.1177/13623613231154067 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519 [article] Autism community priorities in diverse low-resource settings: A country-wide scoping exercise in India [Texte imprimé et/ou numérique] / Sreerupa CHAKRABARTY, Auteur ; Rajanya NANDI, Auteur ; Rakshita SHEKHAR, Auteur ; Sakhi SINGHI, Auteur ; Shoba NAYAR, Auteur ; Jai Ranjan RAM, Auteur ; Shaneel MUKERJI, Auteur ; Bhismadev CHAKRABARTI, Auteur . - p.187?198. in Autism > 28-1 (January 2024) . - p.187?198 Mots-clés : autism spectrum disorders  global  low- and middle-income country  stakeholder consultation Index. décimale : PER Périodiques Résumé : While studies to map the priorities of the autistic community have been undertaken in some high-income countries, there has been little or no such systematic assessment in the global south. India alone is home to an estimated >5?million autistic individuals. To address this gap in the literature, this study conducted a survey of the Indian autism community on their priorities for three areas: skills training, intervention and research. Individuals with a clinical diagnosis of autism spectrum disorders and parents/guardians of autistic individuals were invited to take part in the study. Data from 280 respondents were collected online and followed up with interviews on a subset (n?=?40) chosen through stratified random selection. Results highlighted a unanimous prioritisation for self-help skills as the most important area in skills training, as it was considered the foundation for acquiring all other skills. Speech and language therapy was identified as the most important intervention for autistic individuals. Within research, identifying the most effective ways for the community to support autistic people was given the topmost priority. Researchers, clinicians and policymakers may use these insights to develop services and shape future research that is more in accord with the community?s needs. Lay abstract It is vital to directly engage with the autism community in order to develop better services and drive the research agenda. While some studies in high-income countries have mapped the priorities of the autism community, there is a severe dearth of such efforts in the global south. Five?million autistic individuals are estimated to live in India alone, and there has been little effort to map their priorities. Moreover, studies in high-income countries focused largely on research priorities, and not so much on skills training and interventions. Keeping these needs in mind, we conducted an online survey followed by an in-depth conversation with parents of autistic children and autistic adults drawn from across India. We found that the respondents reported self-help skills to be the most important for training, as they considered it fundamental for every other aspect of life. Speech and language therapy was considered to be the highest intervention priority for this group, highlighting the importance of social communication. Mental health counselling was also considered to be a high priority, but several parents identified it as being more relevant for themselves rather than for their children. Within research, the topmost priority was to understand ways in which the community can better support autistic people. We hope that these findings will help researchers, policymakers and service providers to be able to make well-informed decisions, develop relevant services and shape future research. En ligne : https://dx.doi.org/10.1177/13623613231154067 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)  

Public ISBD [article]  inAutism > 28-1 (January 2024) . - p.199?214 Titre : Supporting caregivers of children with developmental disabilities: Findings from a brief caregiver well-being programme in South Africa Type de document : Texte imprimé et/ou numérique Auteurs : Nola CHAMBERS, Auteur ; David ROSENSTEIN, Auteur ; Petro ERASMUS, Auteur ; Petrus J. DE VRIES, Auteur Article en page(s) : p.199?214 Mots-clés : acceptance and commitment therapy  Africa  caregiver mental health  caregiver well-being  dissemination and implementation research  global mental health  low- and middle-income countries  Well-Beans for Caregivers  World Health Organization Caregiver Skills Tr Index. décimale : PER Périodiques Résumé : Caring for children with developmental delays or disabilities places significant stress on caregivers, which is often exacerbated in low-resource settings. The World Health Organization developed a caregiver skills training for families of children with developmental delays or disabilities, which includes a three-session caregiver well-being module based on Acceptance and Commitment Therapy, that aims to help caregivers build psychological flexibility (i.e. the ability to focus on the present moment, make space for difficult thoughts and emotions and commit to value-driven actions that enrich their lives). We investigated whether this brief caregiver well-being programme was feasible, acceptable and contributed to positive outcomes for caregivers in a rural South African town. We adapted the intervention to the local context using a participatory approach. The ?Well-Beans for Caregivers? adaptation of the World Health Organization Caregiver Skills Training Caregiver Wellbeing module was then delivered by trained facilitators to a group of 10 caregivers in three weekly, 2-h sessions. Most caregivers were single and unemployed. Feedback from the facilitators, caregivers and trainee observers was obtained before, during and after the programme. Results suggested that this brief programme shows promise as a feasible and acceptable intervention, which may lead to improved caregiver well-being and mental health in communities in South Africa. Lay abstract Young children with developmental disabilities and delays who live in low- and middle-income countries are at significant risk of not reaching their full potential. We know that daily interactions with their caregivers (parents or other people taking care of them) play an important role in promoting their development. However, having a child with developmental disabilities can have a negative impact on carers? mental health and well-being, which in turn can influence their capacity to care for their children. To date, very little attention has been given to the caregivers? capacity to care. The World Health Organization developed a Caregiver Skills Training programme which includes a brief, three-session module that focuses on improving caregivers? well-being and mental health. This well-being programme is based on acceptance and commitment therapy. Acceptance and commitment therapy shows increasing evidence of helping people respond to their stressors, thoughts, feelings and experiences a little differently and commit to small changes that are in line with their personal values. Acceptance and commitment therapy has shown promise in improving feelings of well-being in caregivers of children with developmental disabilities. We adapted the World Health Organization Caregiver Skills Training Caregiver well-being module to suit the South African context. The resultant ?Well Beans for Caregivers? was then delivered to caregivers from a rural, low-resource setting in South Africa. We found the intervention easy to implement, highly acceptable to caregivers and showed promising impacts on caregivers? well-being and mental health. This intervention has the potential to be implemented widely and sustainably to build caregivers? capacity to care for their children. En ligne : https://dx.doi.org/10.1177/13623613221133182 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519 [article] Supporting caregivers of children with developmental disabilities: Findings from a brief caregiver well-being programme in South Africa [Texte imprimé et/ou numérique] / Nola CHAMBERS, Auteur ; David ROSENSTEIN, Auteur ; Petro ERASMUS, Auteur ; Petrus J. DE VRIES, Auteur . - p.199?214. in Autism > 28-1 (January 2024) . - p.199?214 Mots-clés : acceptance and commitment therapy  Africa  caregiver mental health  caregiver well-being  dissemination and implementation research  global mental health  low- and middle-income countries  Well-Beans for Caregivers  World Health Organization Caregiver Skills Tr Index. décimale : PER Périodiques Résumé : Caring for children with developmental delays or disabilities places significant stress on caregivers, which is often exacerbated in low-resource settings. The World Health Organization developed a caregiver skills training for families of children with developmental delays or disabilities, which includes a three-session caregiver well-being module based on Acceptance and Commitment Therapy, that aims to help caregivers build psychological flexibility (i.e. the ability to focus on the present moment, make space for difficult thoughts and emotions and commit to value-driven actions that enrich their lives). We investigated whether this brief caregiver well-being programme was feasible, acceptable and contributed to positive outcomes for caregivers in a rural South African town. We adapted the intervention to the local context using a participatory approach. The ?Well-Beans for Caregivers? adaptation of the World Health Organization Caregiver Skills Training Caregiver Wellbeing module was then delivered by trained facilitators to a group of 10 caregivers in three weekly, 2-h sessions. Most caregivers were single and unemployed. Feedback from the facilitators, caregivers and trainee observers was obtained before, during and after the programme. Results suggested that this brief programme shows promise as a feasible and acceptable intervention, which may lead to improved caregiver well-being and mental health in communities in South Africa. Lay abstract Young children with developmental disabilities and delays who live in low- and middle-income countries are at significant risk of not reaching their full potential. We know that daily interactions with their caregivers (parents or other people taking care of them) play an important role in promoting their development. However, having a child with developmental disabilities can have a negative impact on carers? mental health and well-being, which in turn can influence their capacity to care for their children. To date, very little attention has been given to the caregivers? capacity to care. The World Health Organization developed a Caregiver Skills Training programme which includes a brief, three-session module that focuses on improving caregivers? well-being and mental health. This well-being programme is based on acceptance and commitment therapy. Acceptance and commitment therapy shows increasing evidence of helping people respond to their stressors, thoughts, feelings and experiences a little differently and commit to small changes that are in line with their personal values. Acceptance and commitment therapy has shown promise in improving feelings of well-being in caregivers of children with developmental disabilities. We adapted the World Health Organization Caregiver Skills Training Caregiver well-being module to suit the South African context. The resultant ?Well Beans for Caregivers? was then delivered to caregivers from a rural, low-resource setting in South Africa. We found the intervention easy to implement, highly acceptable to caregivers and showed promising impacts on caregivers? well-being and mental health. This intervention has the potential to be implemented widely and sustainably to build caregivers? capacity to care for their children. En ligne : https://dx.doi.org/10.1177/13623613221133182 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519

Stigma and knowledge about autism in Brazil: A psychometric and intervention study / Mônia Aparecida DA SILVA ; Paulo Felipe Ribeiro BANDEIRA ; Kristen GILLESPIE-LYNCH ; Regina Basso ZANON in Autism, 28-1 (January 2024)  

Public ISBD [article]  inAutism > 28-1 (January 2024) . - p.215?228 Titre : Stigma and knowledge about autism in Brazil: A psychometric and intervention study Type de document : Texte imprimé et/ou numérique Auteurs : Mônia Aparecida DA SILVA, Auteur ; Paulo Felipe Ribeiro BANDEIRA, Auteur ; Kristen GILLESPIE-LYNCH, Auteur ; Regina Basso ZANON, Auteur Article en page(s) : p.215?228 Mots-clés : autism  knowledge  network analysis  stigma  scales Index. décimale : PER Périodiques Résumé : Researchers from Brazil reached out to a researcher in the United States to co-develop and evaluate the psychometric properties of a Brazilian version of an autism stigma (social distance) scale and a Participatory Autism Knowledge-Measure (Study 1) and to assess the impact of an online training on autism stigma and knowledge in a Brazilian sample (Study 2). In a psychometric study, 532 Brazilians completed the stigma (EARPA) while 510 completed the knowledge scale (ECAT). In Study 2, 79 Brazilians (mostly white, female university students) participated in a quasi-experimental training evaluation. Exploratory graph analysis revealed one cluster on the EARPA and four clusters on the ECAT (intervention, diagnosis and etiology; autism in adulthood; repetitive behaviors and restricted interests; and socio-communicative development). The training evaluation revealed improvements across most EARPA and ECAT items, as well as changes in all centrality indicators assessed through the network analysis, suggesting that autism stigma and knowledge improved with training. Both scales are promising instruments and may be useful in future Brazilian and cross-cultural studies. The training could be used more widely to improve autism understanding in Brazil. Further cultural adaptations will likely be needed to make the training well-suited to the myriad cultural contexts present within Brazil. Lay abstract To promote the full inclusion of autistic people, we must change the knowledge and attitudes of non-autistic individuals. Unfortunately, access to autism information and support remains limited in Brazil, and stigma is also common. Brazilian researchers reached out to a researcher in the United States to co-develop Brazilian surveys to measure autism stigma and knowledge. Together, they made Brazilian versions of stigma and knowledge surveys which autistic people in the United States had helped make. They also adapted an online autism training used in other countries with help from three Brazilian autistic people and the mother of an autistic child. They used the new measures to see if the autism training improved autism stigma and knowledge among Brazilians. The surveys, called EARPA and ECAT in Brazil, were translated into Portuguese in a previous study. In the first study in this article, 532 Brazilians completed the stigma measure and 510 completed the knowledge measure. The researchers used exploratory graph analysis, which uses the connections between items in a survey to understand which items belong together. Seventy-nine Brazilians participated in the training. They were mostly white, female university students. The EGA showed that the stigma survey measured one big idea while the knowledge survey measured four ideas: diagnosis/cause; socio-communicative development; stimming and special interests; and autism in adulthood. Both scales are promising and may be helpful in future Brazilian and cross-cultural studies about autism. Participants reported more knowledge and less stigma after the autism training, which has been found in other countries too. En ligne : https://dx.doi.org/10.1177/13623613231168917 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519 [article] Stigma and knowledge about autism in Brazil: A psychometric and intervention study [Texte imprimé et/ou numérique] / Mônia Aparecida DA SILVA, Auteur ; Paulo Felipe Ribeiro BANDEIRA, Auteur ; Kristen GILLESPIE-LYNCH, Auteur ; Regina Basso ZANON, Auteur . - p.215?228. in Autism > 28-1 (January 2024) . - p.215?228 Mots-clés : autism  knowledge  network analysis  stigma  scales Index. décimale : PER Périodiques Résumé : Researchers from Brazil reached out to a researcher in the United States to co-develop and evaluate the psychometric properties of a Brazilian version of an autism stigma (social distance) scale and a Participatory Autism Knowledge-Measure (Study 1) and to assess the impact of an online training on autism stigma and knowledge in a Brazilian sample (Study 2). In a psychometric study, 532 Brazilians completed the stigma (EARPA) while 510 completed the knowledge scale (ECAT). In Study 2, 79 Brazilians (mostly white, female university students) participated in a quasi-experimental training evaluation. Exploratory graph analysis revealed one cluster on the EARPA and four clusters on the ECAT (intervention, diagnosis and etiology; autism in adulthood; repetitive behaviors and restricted interests; and socio-communicative development). The training evaluation revealed improvements across most EARPA and ECAT items, as well as changes in all centrality indicators assessed through the network analysis, suggesting that autism stigma and knowledge improved with training. Both scales are promising instruments and may be useful in future Brazilian and cross-cultural studies. The training could be used more widely to improve autism understanding in Brazil. Further cultural adaptations will likely be needed to make the training well-suited to the myriad cultural contexts present within Brazil. Lay abstract To promote the full inclusion of autistic people, we must change the knowledge and attitudes of non-autistic individuals. Unfortunately, access to autism information and support remains limited in Brazil, and stigma is also common. Brazilian researchers reached out to a researcher in the United States to co-develop Brazilian surveys to measure autism stigma and knowledge. Together, they made Brazilian versions of stigma and knowledge surveys which autistic people in the United States had helped make. They also adapted an online autism training used in other countries with help from three Brazilian autistic people and the mother of an autistic child. They used the new measures to see if the autism training improved autism stigma and knowledge among Brazilians. The surveys, called EARPA and ECAT in Brazil, were translated into Portuguese in a previous study. In the first study in this article, 532 Brazilians completed the stigma measure and 510 completed the knowledge measure. The researchers used exploratory graph analysis, which uses the connections between items in a survey to understand which items belong together. Seventy-nine Brazilians participated in the training. They were mostly white, female university students. The EGA showed that the stigma survey measured one big idea while the knowledge survey measured four ideas: diagnosis/cause; socio-communicative development; stimming and special interests; and autism in adulthood. Both scales are promising and may be helpful in future Brazilian and cross-cultural studies about autism. Participants reported more knowledge and less stigma after the autism training, which has been found in other countries too. En ligne : https://dx.doi.org/10.1177/13623613231168917 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519

Autism research capacity building in Northern Mexico: Preliminary evaluation of an ongoing process / Guillermo VELA ; Arturo VELA ; Juan R. MALDONADO CORONADO ; Patricia SANCHEZ LIZARDI ; Diana L. ROBINS in Autism, 28-1 (January 2024)  

Public ISBD [article]  inAutism > 28-1 (January 2024) . - p.229?238 Titre : Autism research capacity building in Northern Mexico: Preliminary evaluation of an ongoing process Type de document : Texte imprimé et/ou numérique Auteurs : Guillermo VELA, Auteur ; Arturo VELA, Auteur ; Juan R. MALDONADO CORONADO, Auteur ; Patricia SANCHEZ LIZARDI, Auteur ; Diana L. ROBINS, Auteur Article en page(s) : p.229?238 Mots-clés : autism  evaluation  LMIC  Mexico  research capacity  research strengthening Index. décimale : PER Périodiques Résumé : Research capacity building is a process by which individuals and organizations develop skills and infrastructure resulting in greater ability to conduct useful research. Frequently, research quality and productivity measures focus on outcomes, such as peer-reviewed publications or grants awarded. Such distal measures are not informative when measuring initial stages of research, a common situation in low- and middle-income countries. This study used Cooke?s six-principle framework to assess the progress of an autism research collaborative in northern Mexico. We established 64 criteria across the six principles and rated them as Not Started, In Progress, or Achieved, based on narratives and process documentation collected for this purpose. Ratings were established for the years 2018, 2020, and 2022, which correspond to Years 5, 7, and 9 since the beginning of the collaborative, respectively. As of 2022, Principles 2 and 3 (?Close to practice? and ?Linkages, collaborations, and partnerships,? respectively) had all begun; no criteria were rated as Not started. The principles with the highest Achieved rates were ?Linkages, collaborations, and partnerships? (90%), and ?Infrastructure? (Principle 6, 70%). Cooke?s research capacity building framework is a useful way to monitor progress of research capacity building and contribute to harmonious development of relevant principles at different levels. Lay abstract To inform improvement of care and public policy, quality research is required. Conducting research projects requires skills and infrastructure. Research capacity building is the process by which individuals and organizations develop greater ability to conduct useful research. However, in the scientific community, research quality and productivity measures are often focused on long-term products, such as publications or grants awarded. Those measures are not helpful when measuring initial stages of research, a common situation in low- and middle-income countries. We used a six-principle framework designed by J. Cooke to assess the progress of an autism research collaborative in northern Mexico. We established 64 criteria across the six principles, and rated them as Not Started, In Progress, or Achieved, based on narratives and process documentation collected for this purpose. Ratings were established for the Years 2018, 2020, and 2022. The principles with the highest Achieved rates were ?Linkages, collaborations, and partnerships? (90%), and ?Infrastructure? (Principle 6, 70%). Cooke?s research capacity building framework is a useful way to monitor progress of research capacity building and contribute to harmonious development of relevant principles at different levels. En ligne : https://dx.doi.org/10.1177/13623613221145787 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519 [article] Autism research capacity building in Northern Mexico: Preliminary evaluation of an ongoing process [Texte imprimé et/ou numérique] / Guillermo VELA, Auteur ; Arturo VELA, Auteur ; Juan R. MALDONADO CORONADO, Auteur ; Patricia SANCHEZ LIZARDI, Auteur ; Diana L. ROBINS, Auteur . - p.229?238. in Autism > 28-1 (January 2024) . - p.229?238 Mots-clés : autism  evaluation  LMIC  Mexico  research capacity  research strengthening Index. décimale : PER Périodiques Résumé : Research capacity building is a process by which individuals and organizations develop skills and infrastructure resulting in greater ability to conduct useful research. Frequently, research quality and productivity measures focus on outcomes, such as peer-reviewed publications or grants awarded. Such distal measures are not informative when measuring initial stages of research, a common situation in low- and middle-income countries. This study used Cooke?s six-principle framework to assess the progress of an autism research collaborative in northern Mexico. We established 64 criteria across the six principles and rated them as Not Started, In Progress, or Achieved, based on narratives and process documentation collected for this purpose. Ratings were established for the years 2018, 2020, and 2022, which correspond to Years 5, 7, and 9 since the beginning of the collaborative, respectively. As of 2022, Principles 2 and 3 (?Close to practice? and ?Linkages, collaborations, and partnerships,? respectively) had all begun; no criteria were rated as Not started. The principles with the highest Achieved rates were ?Linkages, collaborations, and partnerships? (90%), and ?Infrastructure? (Principle 6, 70%). Cooke?s research capacity building framework is a useful way to monitor progress of research capacity building and contribute to harmonious development of relevant principles at different levels. Lay abstract To inform improvement of care and public policy, quality research is required. Conducting research projects requires skills and infrastructure. Research capacity building is the process by which individuals and organizations develop greater ability to conduct useful research. However, in the scientific community, research quality and productivity measures are often focused on long-term products, such as publications or grants awarded. Those measures are not helpful when measuring initial stages of research, a common situation in low- and middle-income countries. We used a six-principle framework designed by J. Cooke to assess the progress of an autism research collaborative in northern Mexico. We established 64 criteria across the six principles, and rated them as Not Started, In Progress, or Achieved, based on narratives and process documentation collected for this purpose. Ratings were established for the Years 2018, 2020, and 2022. The principles with the highest Achieved rates were ?Linkages, collaborations, and partnerships? (90%), and ?Infrastructure? (Principle 6, 70%). Cooke?s research capacity building framework is a useful way to monitor progress of research capacity building and contribute to harmonious development of relevant principles at different levels. En ligne : https://dx.doi.org/10.1177/13623613221145787 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519

Preschool teachers? knowledge, beliefs, and self-efficacy concerning autism: A parallel mixed-methods study of an intervention to improve autism identification / Laura M. MORETT ; Sumaia Mohammed ZAID ; Samsilah ROSLAN ; Mohammed TARESH TALEB ; Pu SONG ; Nor Aniza AHMAD ; Sarah NOMAN in Autism, 28-1 (January 2024)  

Public ISBD [article]  inAutism > 28-1 (January 2024) . - p.239?253 Titre : Preschool teachers? knowledge, beliefs, and self-efficacy concerning autism: A parallel mixed-methods study of an intervention to improve autism identification Type de document : Texte imprimé et/ou numérique Auteurs : Laura M. MORETT, Auteur ; Sumaia Mohammed ZAID, Auteur ; Samsilah ROSLAN, Auteur ; Mohammed TARESH TALEB, Auteur ; Pu SONG, Auteur ; Nor Aniza AHMAD, Auteur ; Sarah NOMAN, Auteur Article en page(s) : p.239?253 Mots-clés : autism identification  beliefs  EMiASD  knowledge  preschool teachers  self-efficacy  Yemen Index. décimale : PER Périodiques Résumé : Preschool teachers can play a critical role in early detection of autism. Equipping preschool teachers with prerequisite knowledge and skills would allow them to identify children with probable autism and referral to diagnostic services. This study aimed to investigate the impact of an educational module (EMiASD) that prepared preschool teachers to identify autism symptoms. The sample included 144 preschool teachers, of which 120 were stratified and randomly assigned to an intervention arm receiving training in EMiASD (n?=?60) or a comparison arm receiving standard training (n?=?60) using a parallel mixed-methods design. Responses to open-ended questions about video case studies revealed improvement in the identification of autism symptoms in preschool teachers in the intervention arm, in contrast to preschool teachers in the comparison arm. Moreover, significant changes in knowledge, belief, and self-efficacy about autism favoured EMiASD. Overall, these results demonstrate the influence of EMiASD in the Yemeni cultural context. Lay Abstract Preschool teachers can play a critical role in early detection of autism. Equipping preschool teachers with prerequisite knowledge and skills would allow them to identify children with probable autism and referral to diagnostic services. This study aimed to investigate the impact of an educational module (EMiASD) that prepared preschool teachers to identify autism symptoms. The sample included 144 preschool teachers, of which 120 were stratified and randomly assigned to an intervention arm receiving training in EMiASD (n?=?60) or a comparison arm receiving standard training (n?=?60) using a parallel mixed-methods design. Responses to open-ended questions about video case studies revealed improvement in the identification of autism symptoms in preschool teachers in the intervention arm, in contrast to preschool teachers in the comparison arm. Moreover, significant changes in knowledge, belief, and self-efficacy about autism favoured EMiASD. Overall, these results demonstrate the influence of EMiASD in the Yemeni cultural context. En ligne : https://dx.doi.org/10.1177/13623613231211850 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519 [article] Preschool teachers? knowledge, beliefs, and self-efficacy concerning autism: A parallel mixed-methods study of an intervention to improve autism identification [Texte imprimé et/ou numérique] / Laura M. MORETT, Auteur ; Sumaia Mohammed ZAID, Auteur ; Samsilah ROSLAN, Auteur ; Mohammed TARESH TALEB, Auteur ; Pu SONG, Auteur ; Nor Aniza AHMAD, Auteur ; Sarah NOMAN, Auteur . - p.239?253. in Autism > 28-1 (January 2024) . - p.239?253 Mots-clés : autism identification  beliefs  EMiASD  knowledge  preschool teachers  self-efficacy  Yemen Index. décimale : PER Périodiques Résumé : Preschool teachers can play a critical role in early detection of autism. Equipping preschool teachers with prerequisite knowledge and skills would allow them to identify children with probable autism and referral to diagnostic services. This study aimed to investigate the impact of an educational module (EMiASD) that prepared preschool teachers to identify autism symptoms. The sample included 144 preschool teachers, of which 120 were stratified and randomly assigned to an intervention arm receiving training in EMiASD (n?=?60) or a comparison arm receiving standard training (n?=?60) using a parallel mixed-methods design. Responses to open-ended questions about video case studies revealed improvement in the identification of autism symptoms in preschool teachers in the intervention arm, in contrast to preschool teachers in the comparison arm. Moreover, significant changes in knowledge, belief, and self-efficacy about autism favoured EMiASD. Overall, these results demonstrate the influence of EMiASD in the Yemeni cultural context. Lay Abstract Preschool teachers can play a critical role in early detection of autism. Equipping preschool teachers with prerequisite knowledge and skills would allow them to identify children with probable autism and referral to diagnostic services. This study aimed to investigate the impact of an educational module (EMiASD) that prepared preschool teachers to identify autism symptoms. The sample included 144 preschool teachers, of which 120 were stratified and randomly assigned to an intervention arm receiving training in EMiASD (n?=?60) or a comparison arm receiving standard training (n?=?60) using a parallel mixed-methods design. Responses to open-ended questions about video case studies revealed improvement in the identification of autism symptoms in preschool teachers in the intervention arm, in contrast to preschool teachers in the comparison arm. Moreover, significant changes in knowledge, belief, and self-efficacy about autism favoured EMiASD. Overall, these results demonstrate the influence of EMiASD in the Yemeni cultural context. En ligne : https://dx.doi.org/10.1177/13623613231211850 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519