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首页> 外文期刊>Health Services Insights >“Managing the Wait”: Parents’ Experiences in Accessing Diagnostic and Treatment Services for Children and Adolescents Diagnosed With Autism Spectrum Disorder
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“Managing the Wait”: Parents’ Experiences in Accessing Diagnostic and Treatment Services for Children and Adolescents Diagnosed With Autism Spectrum Disorder

机译：“管理等待”：父母在获得诊断出患有自闭症谱系障碍的儿童和青少年的诊断和治疗服务方面的经验

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Background: Parents of children and adolescents diagnosed with autism spectrum disorder (ASD) report delays in accessing timely diagnostic and treatment services for their children. Research has generally focused on parents’ experiences in caring for a child diagnosed with ASD. This study describes the process of how parents access ASD services for their children and adolescents. Method: This study used a qualitative research design that was informed by grounded theory methodology. We used constant comparative analysis to develop a process model and a core concept. Results: Seventeen parents of children and adolescents diagnosed with ASD were interviewed. Our process model included 3 main phases: Watchful waiting (noticing suspected behaviors, and searching for assessment and diagnosis); Informed waiting (receiving the diagnosis, facing challenges in accessing treatment services, and realizing the impact of an ASD diagnosis); and Contemplative waiting (pondering the future, reflecting on the past, and making recommendations). “Managing the Wait” was identified as the core category central to parents’ experience of this process. This process was found to be impacted by socioeconomic status, parents’ skills and capacity to advocate on their child’s behalf, and severity of their child’s ASD. Conclusions: Our findings illustrate the many barriers families face during their journey in accessing ASD services. Our results illustrate the need to address wait times for services, and provide education and support services for parents as a means of improving their self-advocacy skills, especially for parents of children and adolescents with severe disability.
机译：背景：被诊断出患有自闭症谱系（ASD）的儿童和青少年的父母报告延迟访问其儿童及时诊断和治疗服务。研究通常集中在父母在诊断为ASD的儿童的照顾中的经验。本研究描述了父母如何访问其儿童和青少年的ASD服务的过程。方法：本研究采用了一种定性的研究设计，通过接地理论方法知识。我们使用持续的比较分析来开发过程模型和核心概念。结果：采访了诊断为ASD的儿童和青少年的17名父母。我们的流程模型包括3个主要阶段：注意（注意到疑似行为，并搜索评估和诊断）;知情等待（接受诊断，面临访问处理服务方面的挑战，实现ASD诊断的影响）;和沉思等待（思考未来，反映过去，并提出建议）。 “管理等待”被确定为核心类别对父母对此过程的经验的核心。发现这一进程受到社会经济地位，父母的技能和倡导他们的孩子的能力，以及他们孩子的亚军的严重程度。结论：我们的研究结果说明了在访问ASD服务的旅程中面临的许多障碍家庭。我们的结果说明了需要满足服务的等待时间，为父母提供教育和支持服务，作为提高自我倡导技能的手段，特别是对于具有严重残疾儿童和青少年的父母。

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