Challenges, Priorities, Barriers to Care, and Stigma in Families of People with Autism: Similarities and Differences among Six Latin American Countries

Autor/inn/en	Paula, Cristiane Silvestre; Cukier, Sebastián; Cunha, Graccielle Rodrigues; Irarrázaval, Matías; Montiel-Nava, Cecilia; Garcia, Ricardo; Rosoli, Analia; Valdez, Daniel; Bordini, Daniela; Shih, Andy; Garrido, Gabriela; Rattazzi, Alexia
Titel	Challenges, Priorities, Barriers to Care, and Stigma in Families of People with Autism: Similarities and Differences among Six Latin American Countries
Quelle	In: Autism: The International Journal of Research and Practice, 24 (2020) 8, S.2228-2242 (15 Seiten) PDF als Volltext Verfügbarkeit
Zusatzinformation	ORCID (Paula, Cristiane Silvestre)
Sprache	englisch
Dokumenttyp	gedruckt; online; Zeitschriftenaufsatz
ISSN	1362-3613
DOI	10.1177/1362361320940073
Schlagwörter	Barriers; Social Bias; Autism; Pervasive Developmental Disorders; Networks; Foreign Countries; Health Services; Children; Educational Improvement; Financial Problems; Working Hours; Parent Child Relationship; Parent Attitudes; Surveys; Cross Cultural Studies; Access to Health Care; Costs; Brazil; Argentina; Uruguay; Chile; Venezuela; Dominican Republic + Suchen Sie Ihr Suchwort? Autismus; Ausland; Health service; Gesundheitsdienst; Gesundheitswesen; Child; Kind; Kinder; Teaching improvement; Unterrichtsentwicklung; Hours of work; Arbeitszeit; Parents-child relationship; Parent-child-relation; Parent-child relationship; Eltern-Kind-Beziehung; Elternverhalten; Survey; Umfrage; Befragung; Cultural comparison; Kulturvergleich; Cost; Kosten; Brasilien; Argentinien; Dominikanische Republik
Abstract	Lack of access to services and support is an important issue for people with autism, but in low- and middle-income countries there is a lack of data on this problem. The aims of this study were to describe the challenges and priorities, identify barriers to care, and map stigma among families of individuals with autism in Latin America. This survey was undertaken by the "Red Espectro Autista Latinoamerica" network, a coalition of researchers/clinicians from six Latin American countries; it comprised 2942 caregivers of children with autism from Brazil, Argentina, Chile, Uruguay, Venezuela, and the Dominican-Republic, who completed the Spanish/Portuguese version of the Caregiver Needs Survey. The survey showed that the main priorities were greater community awareness and improvements in education. The main barriers to care were waiting lists (50.2%), 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, 48.8% reported some type of financial problem, 47.4% had to reduce work hours, and 35.5% had to stop working because of their child's autism. This survey describes the main needs/challenges faced by individuals with autism in Latin America, helping to build data-driven strategies at a national/regional level. (As Provided).
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Erfasst von	ERIC (Education Resources Information Center), Washington, DC
Update	2024/1/01