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

Service encounters across the lifespan in individuals with autism spectrum disorders: Results from a multisite study in Latin America / Cecilia MONTIEL-NAVA in Research in Autism Spectrum Disorders, 79 (November 2020)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 79 (November 2020) . - 101670 Titre : Service encounters across the lifespan in individuals with autism spectrum disorders: Results from a multisite study in Latin America Type de document : Texte imprimé et/ou numérique Auteurs : Cecilia MONTIEL-NAVA, Auteur ; Sebastián CUKIER, Auteur ; Gabriela GARRIDO, Auteur ; Daniel VALDEZ, Auteur ; Cristiane Silvestre PAULA, Auteur ; Ricardo GARCIA, Auteur ; Analia ROSOLI, Auteur ; Matías IRARRÁZAVAL, Auteur ; Alexia RATTAZZI, Auteur Article en page(s) : 101670 Langues : Anglais (eng) Mots-clés : Autism spectrum disorders  Lifespan  Services  Caregiver  Latin-America  Latino Index. décimale : PER Périodiques Résumé : Background Core symptoms of Autism Spectrum Disorder (ASD) continue to affect everyday life as children grow and transition into adulthood. That way, different services may be needed at various stages of their lifetimes. This study aimed to describe service encounters and hours of service per week for individuals with ASD in Latin American countries and compare the data from three age groups (preschoolers, school-aged, and adolescents). Methods The data were obtained from an online survey adapted by Red Espectro Autista Latinoamerica (REAL) in 6 different South & Central American countries. The total sample was composed of 2520 caregivers of children and adolescents with ASD. Results Service encounters for Speech, Occupational, and Behavioral Therapies decreased with patient age, while medication increased. Regardless of the age group, a large proportion of individuals (19–37 %) were not receiving treatment, and those receiving treatment got fewer hours than best practice recommendations. For adolescents, the gaps in treatment are even greater and less consistent. Discussion Failure to offer timely identification and intervention for ASD will result in more impairment of the individual and the family burden. Although there are several initiatives to develop more resources for this population in Latin-America, the provision of services for ASD is still undervalued. Many such individuals might not be receiving the services they need, while most children are mainly receiving therapies with low to moderate evidence at a frequency below the recommended standards. En ligne : https://doi.org/10.1016/j.rasd.2020.101670 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=434 [article] Service encounters across the lifespan in individuals with autism spectrum disorders: Results from a multisite study in Latin America [Texte imprimé et/ou numérique] / Cecilia MONTIEL-NAVA, Auteur ; Sebastián CUKIER, Auteur ; Gabriela GARRIDO, Auteur ; Daniel VALDEZ, Auteur ; Cristiane Silvestre PAULA, Auteur ; Ricardo GARCIA, Auteur ; Analia ROSOLI, Auteur ; Matías IRARRÁZAVAL, Auteur ; Alexia RATTAZZI, Auteur . - 101670. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 79 (November 2020) . - 101670 Mots-clés : Autism spectrum disorders  Lifespan  Services  Caregiver  Latin-America  Latino Index. décimale : PER Périodiques Résumé : Background Core symptoms of Autism Spectrum Disorder (ASD) continue to affect everyday life as children grow and transition into adulthood. That way, different services may be needed at various stages of their lifetimes. This study aimed to describe service encounters and hours of service per week for individuals with ASD in Latin American countries and compare the data from three age groups (preschoolers, school-aged, and adolescents). Methods The data were obtained from an online survey adapted by Red Espectro Autista Latinoamerica (REAL) in 6 different South & Central American countries. The total sample was composed of 2520 caregivers of children and adolescents with ASD. Results Service encounters for Speech, Occupational, and Behavioral Therapies decreased with patient age, while medication increased. Regardless of the age group, a large proportion of individuals (19–37 %) were not receiving treatment, and those receiving treatment got fewer hours than best practice recommendations. For adolescents, the gaps in treatment are even greater and less consistent. Discussion Failure to offer timely identification and intervention for ASD will result in more impairment of the individual and the family burden. Although there are several initiatives to develop more resources for this population in Latin-America, the provision of services for ASD is still undervalued. Many such individuals might not be receiving the services they need, while most children are mainly receiving therapies with low to moderate evidence at a frequency below the recommended standards. En ligne : https://doi.org/10.1016/j.rasd.2020.101670 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=434

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