Daniels Amy M, Como Ariel, Hergüner Sabri, Kostadinova Krasimira, Stosic Jasmina, Shih Andy
Simons Foundation, 160, 5th Avenue, New York, NY, 10010, USA.
Department of Psychiatry, University Hospital Center 'Mother Teresa', RR Dibres, 370, Tirana, Albania.
J Autism Dev Disord. 2017 Aug;47(8):2314-2325. doi: 10.1007/s10803-017-3145-x.
The aim of this study was to understand the diagnostic, service and lived experiences of families affected by ASD in Southeast Europe. A total of 758 caregivers from Albania, Bulgaria, Croatia and Turkey were surveyed from 2013 to 2015 about characteristics of the child with ASD; service encounters; and caregiver perceptions. The average age at first concern was 24.4 months (SD 11.8) and at diagnosis, 40.0 months (SD 19.0). Psychiatrists were the most common diagnostician; most children received some ASD-related service, most frequently speech and language therapy. Caregivers endorsed challenges in access to care and perceived stigma. Despite country differences, findings relative to age at first concern, disparities in access and service utilization, and stigma speak to common regional needs.
本研究的目的是了解东南欧受自闭症谱系障碍（ASD）影响家庭的诊断、服务及生活经历。2013年至2015年期间，对来自阿尔巴尼亚、保加利亚、克罗地亚和土耳其的758名照料者进行了调查，内容涉及患有ASD儿童的特征、服务接触情况以及照料者的看法。首次关注时的平均年龄为24.4个月（标准差11.8），确诊时的平均年龄为40.0个月（标准差19.0）。精神科医生是最常见的诊断医生；大多数儿童接受了一些与ASD相关的服务，最常见的是言语和语言治疗。照料者认可在获得护理方面存在挑战，并感受到了污名化。尽管存在国家差异，但首次关注年龄、获得护理和服务利用方面的差异以及污名化等研究结果反映了该地区的共同需求。
