Burke Meghan M, Johnston Amanda N, Cheung W Catherine, Li Chak, Monárrez Edwin, Aleman-Tovar Janeth
University of Illinois at Urbana-Champaign, Dept. of Special Education, 1310 S. 6th St., Champaign, IL, 61820.
J Dev Phys Disabil. 2024 Apr;36(2):271-292. doi: 10.1007/s10882-023-09906-8. Epub 2023 Apr 14.
Family navigator programs (i.e., programs to train family navigators) are becoming increasingly common among families of children with autism. Family navigators (i.e., individuals who help families access evaluations and/or services) may be parents of children with autism themselves or health professionals. Extant research has shown that family navigators can help families receive timely diagnostic evaluations and initial services. Yet, the development of family navigator programs is unclear; by exploring the input of families of children with autism, such programs can be responsive to family needs. In this study, we extend the extent literature by exploring the lived experiences of 12 parents of autistic children from low-resourced communities to inform the development of a family navigator program. Findings demonstrated that navigator programs need to prepare navigators to address barriers such as limited knowledge and difficulty accepting an autism diagnosis. Navigator programs should teach navigators to use strategies with families including educating families about services and connecting families with peer support. Program content should reflect direct services, government services, and advocacy strategies. Notably, for true improvements to service access for all autistic children, systemic changes are also needed in the service delivery systems. Implications are discussed.
家庭导航项目（即培训家庭导航员的项目）在自闭症儿童家庭中越来越普遍。家庭导航员（即帮助家庭获得评估和/或服务的人员）可能本身就是自闭症儿童的家长，也可能是健康专业人员。现有研究表明，家庭导航员可以帮助家庭及时获得诊断评估和初始服务。然而，家庭导航项目的发展情况尚不明朗；通过探索自闭症儿童家庭的意见，此类项目可以更好地满足家庭需求。在本研究中，我们通过探索来自资源匮乏社区的12位自闭症儿童家长的生活经历，扩展了现有文献，以为家庭导航项目的发展提供参考。研究结果表明，导航项目需要让导航员做好准备，以应对诸如知识有限和难以接受自闭症诊断等障碍。导航项目应教导导航员与家庭使用一些策略，包括向家庭介绍服务内容以及为家庭提供同伴支持。项目内容应反映直接服务、政府服务和宣传策略。值得注意的是，为了真正改善所有自闭症儿童获得服务的情况，服务提供系统也需要进行系统性变革。文中将讨论相关影响。
