1 The Bridge School, UK.
2 UCL Institute of Education, University College London, UK.
Autism. 2018 Jul;22(5):571-584. doi: 10.1177/1362361316687989. Epub 2017 Apr 28.
Much research has documented the elevated levels of stress experienced by families of autistic children. Yet remarkably little research has examined the types of support that these families perceive to be beneficial to their lives. This study, co-produced by researchers and school-based professionals, sought to establish these families' support needs from their own perspectives. In total, 139 parents of autistic children with additional intellectual disabilities and limited spoken communication, all attending an inner-city London school, participated in an initial survey examining parental wellbeing, self-efficacy and the extent to which they felt supported. Semi-structured interviews were conducted with a subgroup of parents ( n = 17), some of whom reported in the survey that they felt unsupported, in order to gain their in-depth perspectives. The results from both the survey and the interviews suggested that existing support (particularly from formal support services) was not meeting parents' needs, which ultimately made them feel isolated and alienated. Parents who were interviewed called for service provision that adopted a relational, family-centred approach - one that understands the specific needs of the whole family, builds a close working relationship with them and ensures that they are supported at times when the parents and families feel they need it most.
许多研究都记录了自闭症儿童家庭所经历的压力水平升高。然而，令人惊讶的是，很少有研究检查这些家庭认为对他们的生活有益的支持类型。这项由研究人员和学校专业人员共同开展的研究旨在从这些家庭自身的角度确定他们的支持需求。共有 139 名患有自闭症和智力障碍且口语交流有限的儿童的家长参加了这项研究，他们都就读于伦敦市中心的一所学校。该研究最初的调查评估了家长的幸福感、自我效能感以及他们感受到的支持程度。研究人员对调查中报告感到不受支持的家长（ n = 17）进行了半结构化访谈，以深入了解他们的观点。调查和访谈的结果表明，现有的支持（特别是来自正式支持服务）没有满足家长的需求，这最终使他们感到孤立和疏远。接受访谈的家长呼吁提供采用关系型、以家庭为中心的服务模式——这种模式理解整个家庭的具体需求，与他们建立密切的工作关系，并确保在父母和家庭最需要的时候为他们提供支持。
