Challenges, priorities, barriers to care, and stigma in families of people with autism: Similarities and differences among six Latin American countries / Cristiane Silvestre PAULA in Autism, 24-8 (November 2020)  

Public ISBD [article]  inAutism > 24-8 (November 2020) . - p.2228-2242 Titre : Challenges, priorities, barriers to care, and stigma in families of people with autism: Similarities and differences among six Latin American countries Type de document : Texte imprimé et/ou numérique Auteurs : Cristiane Silvestre PAULA, Auteur ; Sebastián CUKIER, Auteur ; Graccielle Rodrigues CUNHA, Auteur ; Matías IRARRÁZAVAL, Auteur ; Cecilia MONTIEL-NAVA, Auteur ; Ricardo GARCIA, Auteur ; Analia ROSOLI, Auteur ; Daniel VALDEZ, Auteur ; Daniela BORDINI, Auteur ; Andy SHIH, Auteur ; Gabriela GARRIDO, Auteur ; Alexia RATTAZZI, Auteur Article en page(s) : p.2228-2242 Langues : Anglais (eng) Mots-clés : *autism  *economic costs  *healthcare utilization  *stigma  *treatment barriers Index. décimale : PER Périodiques Résumé : Approximately 6 million individuals with autism spectrum disorder live in Latin America. In order to strengthen autism spectrum disorder research collaborations and awareness in the region, the Latin American Autism Spectrum Network (Red Espectro Autista Latinoamerica) was constituted in 2015, comprising researchers and clinicians from the following six countries: Brazil Argentina, Chile, Uruguay, Venezuela, and the Dominican Republic. This first multisite study from the Red Espectro Autista Latinoamerica network aims to describe the challenges and priorities to identify barriers to care and to map stigma among families of individuals with autism spectrum disorder living in Latin America. A total of 2942 caregivers from these six countries completed an online survey showing that the main priorities were greater community awareness and improvements in the educational system for individuals with autism spectrum disorder. In addition to that, the main barriers to care were related to lack of structure, mainly waiting lists (50.2%), high treatment costs (35.2%), and lack of specialized services (26.1%). Stigma experienced by families was frequent: one third reported feeling discriminated against and helpless for having a child with autism spectrum disorder. Also, 48.8% of the caregivers declared financial problems, 47.4% of them had to cut down work hours, and 35.5% had to leave their jobs because of their child's autism spectrum disorder. This is a pioneer study providing a description of the needs and challenges faced by families affected by autism spectrum disorder in Latin America, helping to build data-driven strategies at the national and regional levels. En ligne : http://dx.doi.org/10.1177/1362361320940073 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=431 [article] Challenges, priorities, barriers to care, and stigma in families of people with autism: Similarities and differences among six Latin American countries [Texte imprimé et/ou numérique] / Cristiane Silvestre PAULA, Auteur ; Sebastián CUKIER, Auteur ; Graccielle Rodrigues CUNHA, Auteur ; Matías IRARRÁZAVAL, Auteur ; Cecilia MONTIEL-NAVA, Auteur ; Ricardo GARCIA, Auteur ; Analia ROSOLI, Auteur ; Daniel VALDEZ, Auteur ; Daniela BORDINI, Auteur ; Andy SHIH, Auteur ; Gabriela GARRIDO, Auteur ; Alexia RATTAZZI, Auteur . - p.2228-2242. Langues : Anglais (eng) in Autism > 24-8 (November 2020) . - p.2228-2242 Mots-clés : *autism  *economic costs  *healthcare utilization  *stigma  *treatment barriers Index. décimale : PER Périodiques Résumé : Approximately 6 million individuals with autism spectrum disorder live in Latin America. In order to strengthen autism spectrum disorder research collaborations and awareness in the region, the Latin American Autism Spectrum Network (Red Espectro Autista Latinoamerica) was constituted in 2015, comprising researchers and clinicians from the following six countries: Brazil Argentina, Chile, Uruguay, Venezuela, and the Dominican Republic. This first multisite study from the Red Espectro Autista Latinoamerica network aims to describe the challenges and priorities to identify barriers to care and to map stigma among families of individuals with autism spectrum disorder living in Latin America. A total of 2942 caregivers from these six countries completed an online survey showing that the main priorities were greater community awareness and improvements in the educational system for individuals with autism spectrum disorder. In addition to that, the main barriers to care were related to lack of structure, mainly waiting lists (50.2%), high treatment costs (35.2%), and lack of specialized services (26.1%). Stigma experienced by families was frequent: one third reported feeling discriminated against and helpless for having a child with autism spectrum disorder. Also, 48.8% of the caregivers declared financial problems, 47.4% of them had to cut down work hours, and 35.5% had to leave their jobs because of their child's autism spectrum disorder. This is a pioneer study providing a description of the needs and challenges faced by families affected by autism spectrum disorder in Latin America, helping to build data-driven strategies at the national and regional levels. En ligne : http://dx.doi.org/10.1177/1362361320940073 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=431

Identifying Autism with a Brief and Low-Cost Screening Instrument-OERA: Construct Validity, Invariance Testing, and Agreement Between Judges / C. S. PAULA in Journal of Autism and Developmental Disorders, 48-5 (May 2018)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 48-5 (May 2018) . - p.1780-1791 Titre : Identifying Autism with a Brief and Low-Cost Screening Instrument-OERA: Construct Validity, Invariance Testing, and Agreement Between Judges Type de document : Texte imprimé et/ou numérique Auteurs : C. S. PAULA, Auteur ; G. R. CUNHA, Auteur ; Daniela BORDINI, Auteur ; Décio BRUNONI, Auteur ; A. C. MOYA, Auteur ; Cleonice Alves BOSA, Auteur ; J. J. MARI, Auteur ; H. COGO-MOREIRA, Auteur Article en page(s) : p.1780-1791 Langues : Anglais (eng) Mots-clés : Autism  Construct validity  Public health  Screening  Sensitivity  Specificity Index. décimale : PER Périodiques Résumé : Simple and low-cost observational-tools to detect symptoms of Autism Spectrum Disorder (ASD) are still necessary. The OERA is a new assessment tool to screen children eliciting observable behaviors with no substantial knowledge on ASD required. The sample was 99 children aged 3-10: 76 with ASD and 23 without ASD (11/23 had intellectual disability). The 13 remained items exhibited high interrater agreement and high reliability loaded onto a single latent trait. Such model showed excellent fit indices evaluated via confirmatory factor analysis and no item showed differential function in terms of age/sex/IQ. A cutoff of five points or higher resulted in the highest sensitivity (92.75) and specificity (90.91) percentages. OERA is a brief, stable, low-cost standardized observational-screening to identify ASD children. En ligne : http://dx.doi.org/10.1007/s10803-017-3440-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=355 [article] Identifying Autism with a Brief and Low-Cost Screening Instrument-OERA: Construct Validity, Invariance Testing, and Agreement Between Judges [Texte imprimé et/ou numérique] / C. S. PAULA, Auteur ; G. R. CUNHA, Auteur ; Daniela BORDINI, Auteur ; Décio BRUNONI, Auteur ; A. C. MOYA, Auteur ; Cleonice Alves BOSA, Auteur ; J. J. MARI, Auteur ; H. COGO-MOREIRA, Auteur . - p.1780-1791. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 48-5 (May 2018) . - p.1780-1791 Mots-clés : Autism  Construct validity  Public health  Screening  Sensitivity  Specificity Index. décimale : PER Périodiques Résumé : Simple and low-cost observational-tools to detect symptoms of Autism Spectrum Disorder (ASD) are still necessary. The OERA is a new assessment tool to screen children eliciting observable behaviors with no substantial knowledge on ASD required. The sample was 99 children aged 3-10: 76 with ASD and 23 without ASD (11/23 had intellectual disability). The 13 remained items exhibited high interrater agreement and high reliability loaded onto a single latent trait. Such model showed excellent fit indices evaluated via confirmatory factor analysis and no item showed differential function in terms of age/sex/IQ. A cutoff of five points or higher resulted in the highest sensitivity (92.75) and specificity (90.91) percentages. OERA is a brief, stable, low-cost standardized observational-screening to identify ASD children. En ligne : http://dx.doi.org/10.1007/s10803-017-3440-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=355

Procedures and compliance of a video modeling applied behavior analysis intervention for Brazilian parents of children with autism spectrum disorders / Leila F. BAGAIOLO in Autism, 21-5 (July 2017)  

Public ISBD [article]  inAutism > 21-5 (July 2017) . - p.603-610 Titre : Procedures and compliance of a video modeling applied behavior analysis intervention for Brazilian parents of children with autism spectrum disorders Type de document : Texte imprimé et/ou numérique Auteurs : Leila F. BAGAIOLO, Auteur ; Jair de J. MARI, Auteur ; Daniela BORDINI, Auteur ; Tatiane C. RIBEIRO, Auteur ; Maria Carolina C. MARTONE, Auteur ; Sheila C. CAETANO, Auteur ; Décio BRUNONI, Auteur ; Helena BRENTANI, Auteur ; Cristiane S. PAULA, Auteur Article en page(s) : p.603-610 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Video modeling using applied behavior analysis techniques is one of the most promising and cost-effective ways to improve social skills for parents with autism spectrum disorder children. The main objectives were: (1) To elaborate/describe videos to improve eye contact and joint attention, and to decrease disruptive behaviors of autism spectrum disorder children, (2) to describe a low-cost parental training intervention, and (3) to assess participant?s compliance. This is a descriptive study of a clinical trial for autism spectrum disorder children. The parental training intervention was delivered over 22?weeks based on video modeling. Parents with at least 8?years of schooling with an autism spectrum disorder child between 3 and 6?years old with an IQ lower than 70 were invited to participate. A total of 67 parents fulfilled the study criteria and were randomized into two groups: 34 as the intervention and 33 as controls. In all, 14 videos were recorded covering management of disruptive behaviors, prompting hierarchy, preference assessment, and acquisition of better eye contact and joint attention. Compliance varied as follows: good 32.4%, reasonable 38.2%, low 5.9%, and 23.5% with no compliance. Video modeling parental training seems a promising, feasible, and low-cost way to deliver care for children with autism spectrum disorder, particularly for populations with scarce treatment resources. En ligne : http://dx.doi.org/10.1177/1362361316677718 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=310 [article] Procedures and compliance of a video modeling applied behavior analysis intervention for Brazilian parents of children with autism spectrum disorders [Texte imprimé et/ou numérique] / Leila F. BAGAIOLO, Auteur ; Jair de J. MARI, Auteur ; Daniela BORDINI, Auteur ; Tatiane C. RIBEIRO, Auteur ; Maria Carolina C. MARTONE, Auteur ; Sheila C. CAETANO, Auteur ; Décio BRUNONI, Auteur ; Helena BRENTANI, Auteur ; Cristiane S. PAULA, Auteur . - p.603-610. Langues : Anglais (eng) in Autism > 21-5 (July 2017) . - p.603-610 Index. décimale : PER Périodiques Résumé : Video modeling using applied behavior analysis techniques is one of the most promising and cost-effective ways to improve social skills for parents with autism spectrum disorder children. The main objectives were: (1) To elaborate/describe videos to improve eye contact and joint attention, and to decrease disruptive behaviors of autism spectrum disorder children, (2) to describe a low-cost parental training intervention, and (3) to assess participant?s compliance. This is a descriptive study of a clinical trial for autism spectrum disorder children. The parental training intervention was delivered over 22?weeks based on video modeling. Parents with at least 8?years of schooling with an autism spectrum disorder child between 3 and 6?years old with an IQ lower than 70 were invited to participate. A total of 67 parents fulfilled the study criteria and were randomized into two groups: 34 as the intervention and 33 as controls. In all, 14 videos were recorded covering management of disruptive behaviors, prompting hierarchy, preference assessment, and acquisition of better eye contact and joint attention. Compliance varied as follows: good 32.4%, reasonable 38.2%, low 5.9%, and 23.5% with no compliance. Video modeling parental training seems a promising, feasible, and low-cost way to deliver care for children with autism spectrum disorder, particularly for populations with scarce treatment resources. En ligne : http://dx.doi.org/10.1177/1362361316677718 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=310

Validating the Child Behavior Checklist 1.5-5 as a screening tool for autism spectrum disorder / Norton KITANISHI in Autism, 29-4 (April 2025)  

Public ISBD [article]  inAutism > 29-4 (April 2025) . - p.1072-1079 Titre : Validating the Child Behavior Checklist 1.5-5 as a screening tool for autism spectrum disorder Type de document : Texte imprimé et/ou numérique Auteurs : Norton KITANISHI, Auteur ; Daniela BORDINI, Auteur ; Marcos V V RIBEIRO, Auteur ; Cristiane Silvestre PAULA, Auteur ; Helena BRENTANI, Auteur ; Joana PORTELESE, Auteur ; Pamela J SURKAN, Auteur ; Silvia S MARTINS, Auteur ; Jair de JESUS MARI, Auteur ; Paola Matiko MARTINS OKUDA, Auteur ; Sheila C CAETANO, Auteur Article en page(s) : p.1072-1079 Langues : Anglais (eng) Mots-clés : autism spectrum disorder  child behavior  diagnosis  screening  validity Index. décimale : PER Périodiques Résumé : Early identification of autism spectrum disorder through cost-effective screening is crucial in low- and middle-income countries. The Child Behavior Checklist 1.5-5, using the Autism Spectrum Problems and Withdrawn Syndrome subscales, has potential as a level 1 autism spectrum disorder screening tool, though its construct validity in low- and middle-income countries remains underexplored. We aimed to validate the Child Behavior Checklist 1.5-5 for autism spectrum disorder screening in a representative sample of 1292 Brazilian children aged 3-5?years and 70 autism spectrum disorder children aged 1-5?years. Confirmatory factor analysis evaluated model fit indices and correlation strength between Child Behavior Checklist items and autism spectrum disorder diagnoses. Receiver operating characteristic curves assessed the optimal cutoff score. The Autism Spectrum Problems model demonstrated good fit and reliability (comparative fit index = 0.96, root mean square error of approximation = 0.037, ? = 0.869), as did the Withdrawn Syndrome model (comparative fit index = 0.974, root mean square error of approximation = 0.034, ? = 0.776), with one item per model showing low factor loadings. A cutoff score of 6 on the Autism Spectrum Problems yielded 82.5% sensitivity and 83.4% specificity, while a cutoff of 4 on the Withdrawn scale resulted in 87.9% sensitivity and 82.2% specificity. The Child Behavior Checklist 1.5-5 Autism Spectrum Problems and Withdrawn scales are reliable level 1 autism spectrum disorder screeners for Brazilian children, with good internal consistency and construct validity.Lay abstract Early identification of Autism Spectrum Disorder is very important, especially in low and middle-income countries, where access to resources is often limited. The Child Behavior Checklist 1.5-5 is a tool that has been used to help identify children with autism spectrum disorder through specific behavior patterns. However, its effectiveness in low- and middle-income country settings has not been thoroughly studied. This research focused on evaluating the Child Behavior Checklist 1.5-5 as a screening tool for autism spectrum disorder among Brazilian children. The study involved 1292 children aged 3-5?years from the general population and 70 children with autism spectrum disorder aged 1-5?years. Using advanced statistical methods, the study tested how well the Child Behavior Checklist identified children with autism spectrum disorder and how reliable it was in this context. The findings showed that the Child Behavior Checklist 1.5-5 performed well in identifying autism spectrum disorder, with high reliability and consistency in the results. Although one item in each of the autism spectrum problems and withdrawn syndrome subscales did not perform as strongly, the overall tool was effective. In summary, the Child Behavior Checklist 1.5-5 proves to be a reliable and valid tool for early autism spectrum disorder screening in Brazilian children. This can help ensure that more children in low- and middle-income country settings are identified early and receive the necessary support and interventions to help them thrive. Future research should continue to test this tool in different contexts to confirm its usefulness across various populations. En ligne : https://dx.doi.org/10.1177/13623613241293088 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=552 [article] Validating the Child Behavior Checklist 1.5-5 as a screening tool for autism spectrum disorder [Texte imprimé et/ou numérique] / Norton KITANISHI, Auteur ; Daniela BORDINI, Auteur ; Marcos V V RIBEIRO, Auteur ; Cristiane Silvestre PAULA, Auteur ; Helena BRENTANI, Auteur ; Joana PORTELESE, Auteur ; Pamela J SURKAN, Auteur ; Silvia S MARTINS, Auteur ; Jair de JESUS MARI, Auteur ; Paola Matiko MARTINS OKUDA, Auteur ; Sheila C CAETANO, Auteur . - p.1072-1079. Langues : Anglais (eng) in Autism > 29-4 (April 2025) . - p.1072-1079 Mots-clés : autism spectrum disorder  child behavior  diagnosis  screening  validity Index. décimale : PER Périodiques Résumé : Early identification of autism spectrum disorder through cost-effective screening is crucial in low- and middle-income countries. The Child Behavior Checklist 1.5-5, using the Autism Spectrum Problems and Withdrawn Syndrome subscales, has potential as a level 1 autism spectrum disorder screening tool, though its construct validity in low- and middle-income countries remains underexplored. We aimed to validate the Child Behavior Checklist 1.5-5 for autism spectrum disorder screening in a representative sample of 1292 Brazilian children aged 3-5?years and 70 autism spectrum disorder children aged 1-5?years. Confirmatory factor analysis evaluated model fit indices and correlation strength between Child Behavior Checklist items and autism spectrum disorder diagnoses. Receiver operating characteristic curves assessed the optimal cutoff score. The Autism Spectrum Problems model demonstrated good fit and reliability (comparative fit index = 0.96, root mean square error of approximation = 0.037, ? = 0.869), as did the Withdrawn Syndrome model (comparative fit index = 0.974, root mean square error of approximation = 0.034, ? = 0.776), with one item per model showing low factor loadings. A cutoff score of 6 on the Autism Spectrum Problems yielded 82.5% sensitivity and 83.4% specificity, while a cutoff of 4 on the Withdrawn scale resulted in 87.9% sensitivity and 82.2% specificity. The Child Behavior Checklist 1.5-5 Autism Spectrum Problems and Withdrawn scales are reliable level 1 autism spectrum disorder screeners for Brazilian children, with good internal consistency and construct validity.Lay abstract Early identification of Autism Spectrum Disorder is very important, especially in low and middle-income countries, where access to resources is often limited. The Child Behavior Checklist 1.5-5 is a tool that has been used to help identify children with autism spectrum disorder through specific behavior patterns. However, its effectiveness in low- and middle-income country settings has not been thoroughly studied. This research focused on evaluating the Child Behavior Checklist 1.5-5 as a screening tool for autism spectrum disorder among Brazilian children. The study involved 1292 children aged 3-5?years from the general population and 70 children with autism spectrum disorder aged 1-5?years. Using advanced statistical methods, the study tested how well the Child Behavior Checklist identified children with autism spectrum disorder and how reliable it was in this context. The findings showed that the Child Behavior Checklist 1.5-5 performed well in identifying autism spectrum disorder, with high reliability and consistency in the results. Although one item in each of the autism spectrum problems and withdrawn syndrome subscales did not perform as strongly, the overall tool was effective. In summary, the Child Behavior Checklist 1.5-5 proves to be a reliable and valid tool for early autism spectrum disorder screening in Brazilian children. This can help ensure that more children in low- and middle-income country settings are identified early and receive the necessary support and interventions to help them thrive. Future research should continue to test this tool in different contexts to confirm its usefulness across various populations. En ligne : https://dx.doi.org/10.1177/13623613241293088 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=552

---

1 (1 - 4 / 4)