Araripe Beatriz, Montiel-Nava Cecilia, Bordini Daniela, Cunha Graccielle R, Garrido Gabriela, Cukier Sebastián, Garcia Ricardo, Rosoli Analia, Valdez Daniel, Caetano Sheila C, Rattazzi Alexia, Paula Cristiane S
Departamento de Psiquiatria, Universidade Federal de São Paulo (UNIFESP), São Paulo 04017-030, SP, Brazil.
Department of Psychological Sciences, Universidad de Texas Rio Grande Valley, Edinburg, 78539 TX, USA.
Brain Sci. 2022 Oct 21;12(10):1421. doi: 10.3390/brainsci12101421.
Delayed diagnosis and a lack of adequate care for people with autism spectrum disorder (ASD) are related to worse outcomes and quality of life. This study aimed to identify the profile of service use, barriers to access care, and factors related to those barriers in Brazilian families with children with ASD. A total of 927 families with children with ASD (3-17 years) from five Brazilian regions completed an online version of the Caregivers Needs Survey. Results showed that the most used services were behavioral interventions and pharmacotherapy, while the most used professionals were neurologists, nutritionists, speech therapists, psychiatrists, psychologists, and pediatricians. The main barriers included waiting lists, costs, and the absence of services or treatment. Service use varied according to age, the region of residence, type of health care system used, and the parents/caregivers' education. Access to behavioral interventions was more frequent among users of the private system/health insurance and families whose caregivers had higher education. The absence of specialized services/treatments was less frequent among residents of state capitals and families whose caregivers had higher levels of education. This study highlights how families with children/adolescents with ASD in Brazil face significant barriers to access care related to sociodemographic factors.
自闭症谱系障碍(ASD)患者的诊断延迟和缺乏充分护理与更差的预后和生活质量相关。本研究旨在确定巴西有ASD儿童的家庭的服务使用情况、获得护理的障碍以及与这些障碍相关的因素。来自巴西五个地区的927个有ASD儿童(3至17岁)的家庭完成了在线版的照顾者需求调查。结果显示,最常使用的服务是行为干预和药物治疗,而最常接触的专业人员是神经科医生、营养师、言语治疗师、精神科医生、心理学家和儿科医生。主要障碍包括等候名单、费用以及缺乏服务或治疗。服务使用情况因年龄、居住地区、所使用的医疗保健系统类型以及父母/照顾者的教育程度而异。在使用私人系统/医疗保险的人群以及照顾者受过高等教育的家庭中,获得行为干预的情况更为常见。在州府居民以及照顾者受教育程度较高的家庭中,缺乏专业服务/治疗的情况较少见。本研究凸显了巴西有ASD儿童/青少年的家庭在获得与社会人口因素相关的护理方面面临的重大障碍。