[article]
| 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 |
| Auteurs : |
Cristiane S. 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 |
in Autism > 24-8 (November 2020) . - p.2228-2242
[article] Challenges, priorities, barriers to care, and stigma in families of people with autism: Similarities and differences among six Latin American countries [texte imprimé] / Cristiane S. 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 |
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Faire une suggestion Affiner la rechercheAutism in Southeast Europe: A Survey of Caregivers of Children with Autism Spectrum Disorders in Journal of Autism and Developmental Disorders, 47-8 (August 2017)
