Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities.
Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities.
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DOI：
10.1177/1362361316661261
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发表时间：
2017-11
期刊：
影响因子：
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通讯作者：
Nicolaidis C
中科院分区：
文献类型：
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作者：
Raymaker DM;McDonald KE;Ashkenazy E;Gerrity M;Baggs AM;Kripke C;Hourston S;Nicolaidis C
我们的目标是使用基于社区的参与性研究方法来识别和比较自闭症成人和患有或不患有其他残疾的成人所经历的医疗保健障碍。为此，我们开发了一种长格式和短格式工具来评估临床和研究环境中的障碍。我们使用医疗保健障碍检查表 - 长表对 437 名参与者进行了调查（209 名自闭症患者、55 名患有残疾的非自闭症患者和 173 名没有残疾的非自闭症患者）。自闭症参与者选择了不同且更大的医疗保健障碍，特别是在情绪调节、患者与提供者沟通、感官敏感性和医疗保健导航相关的领域。最大的障碍是恐惧或焦虑 (35% (n = 74))、无法足够快地处理信息以参与有关医疗保健的实时讨论 (32% (n = 67))、对成本的担忧 (30% (n = 62))、导致感官问题的设施 30% ((n = 62)) 以及与提供者沟通困难 (29% (n = 61))。长格式工具表现出良好的内容和结构效度。组合起来创建简表的项目具有显着的高相关性（范围 0.2-0.8，p < 0.001），并且表现出对变化的响应能力。我们建议医疗保健提供者、诊所和其他在医疗保健机构工作的人意识到这些障碍，并敦促进行更多干预研究，探索消除这些障碍的方法。
Our objective was to use a community-based participatory research approach to identify and compare barriers to healthcare experienced by autistic adults and adults with and without other disabilities. To do so, we developed a Long- and Short-Form instrument to assess barriers in clinical and research settings. Using the Barriers to Healthcare Checklist–Long Form, we surveyed 437 participants (209 autistic, 55 non-autistic with disabilities, and 173 non-autistic without disabilities). Autistic participants selected different and greater barriers to healthcare, particularly in areas related to emotional regulation, patient-provider communication, sensory sensitivity, and healthcare navigation. Top barriers were fear or anxiety (35% (n = 74)), not being able to process information fast enough to participate in real-time discussions about healthcare (32% (n = 67)), concern about cost (30% (n = 62)), facilities causing sensory issues 30% ((n = 62)), and difficulty communicating with providers (29% (n = 61)). The Long Form instrument exhibited good content and construct validity. The items combined to create the Short Form had predominantly high levels of correlation (range 0.2–0.8, p < 0.001) and showed responsiveness to change. We recommend healthcare providers, clinics, and others working in healthcare settings to be aware of these barriers, and urge more intervention research to explore means for removing them.