Gomes Paulyane T M, Lima Leonardo H L, Bueno Mayza K G, Araújo Liubiana A, Souza Nathan M
Faculdade de Ciências Médicas, Universidade José do Rosário Vellano (UNIFENAS), Belo Horizonte, MG, Brazil.
Department of Pediatrics, Escola de Medicina, Universidade Federal de Ouro Preto (UFOP), Ouro Preto, MG, Brazil.
J Pediatr (Rio J). 2015 Mar-Apr;91(2):111-21. doi: 10.1016/j.jped.2014.08.009. Epub 2014 Dec 10.
To describe the challenges faced by families caring for children with autism spectrum disorder (ASD) in Brazil and the coping strategies employed.
Systematic review of articles published until September of 2013, without language restrictions, using quality appraisal (AMSTAR and CASP/Oxford instruments).
The literature shows parental emotional overload as one of the main challenges faced by families, especially mothers. The main stressors were diagnostic postponement, difficulty dealing with the diagnosis and associated symptoms, and poor access to health services and social support. The predominant coping strategies found included information exchange between affected families and integrated healthcare network for patient and family support.
ASD exerts strong influence on family dynamics, resulting in caregiver overload, especially in mothers. The Brazilian Unified Health System needs to provide comprehensive, continuous, and coordinated care to strengthen the patient-family dyad and promote the full development and societal inclusion of children with ASD.
描述巴西照顾自闭症谱系障碍（ASD）儿童的家庭所面临的挑战以及所采用的应对策略。
对截至2013年9月发表的文章进行系统综述，无语言限制，采用质量评估（AMSTAR和CASP/牛津工具）。
文献表明，父母的情感负担过重是家庭面临的主要挑战之一，尤其是母亲。主要压力源包括诊断延迟、应对诊断及相关症状的困难，以及获得医疗服务和社会支持的机会有限。发现的主要应对策略包括受影响家庭之间的信息交流以及为患者和家庭提供支持的综合医疗保健网络。
ASD对家庭动态产生强烈影响，导致照顾者负担过重，尤其是母亲。巴西统一卫生系统需要提供全面、持续和协调的护理，以加强患者与家庭的二元关系，并促进ASD儿童的全面发展和社会融入。
