成年自闭症患者报告的基层医疗服务接触的障碍与促进因素：一项定性研究。
Barriers and facilitators to primary healthcare encounters as reported by autistic adults: a qualitative study.
作者信息
Stein Duker Leah I, Giffin Willa, Taylor Elinor E, Shkhyan Lily, Pomponio Davidson Amber, Mosqueda Laura
机构信息
Chan Division of Occupational Science and Occupational Therapy, University of Southern California, Los Angeles, CA, United States.
Department of Health and Rehabilitation Sciences, College of Public Health, Temple University, Philadelphia, PA, United States.
出版信息
Front Med (Lausanne). 2025 Mar 12;12:1481953. doi: 10.3389/fmed.2025.1481953. eCollection 2025.
BACKGROUND
Primary care is designed to co-manage health concerns, contribute to preventive care, and provide medical care coordination. Receiving primary care may be especially vital for autistic people, many of whom disproportionately experience psychiatric and physical health conditions. However, autistic adults often face barriers to receiving primary care, and first-hand accounts of these challenges are limited. Therefore, the purpose of this study was to describe barriers and facilitators to primary care encounters as reported by autistic adults.
METHODS
Interviews were conducted with 34 autistic adults in Los Angeles and Philadelphia, lasted an average of 26 min, were transcribed verbatim, and analyzed using thematic analysis. This dataset is part of a larger study that interviewed autistic adults, caregivers, and primary care providers (PCPs).
RESULTS
Participants were primarily White, non-Hispanic, and had a mean age of 32 years. Five overarching themes describing challenges and potential strategies to improve care emerged from the interviews: (1) , (2) , (3) (4) and (5) , while simultaneously highlighting the importance of tailoring care for autistic adults to improve primary care experiences. Results, specifically in the communication and autism-specific knowledge themes, were consistent with the neurodiversity model of autism, as participants highlighted stigma and mutual communication as key healthcare barriers.
CONCLUSION
Findings provide a nuanced understanding of autistic adult participants' primary care experiences, highlighting their perception of barriers and facilitators to these healthcare encounters. These results offer valuable insights for improving the accessibility and quality of care for autistic people, many of which are practical, low/no cost, and easy to implement. Strategies also emphasized the diversity of experiences and preferences for autistic patients, highlighting the importance of tailoring accommodations in the primary care setting.
背景
初级保健旨在共同管理健康问题、促进预防保健并提供医疗护理协调。接受初级保健对自闭症患者可能尤为重要，他们中的许多人在精神和身体健康状况方面存在不成比例的问题。然而，自闭症成年人在接受初级保健时往往面临障碍，而关于这些挑战的第一手描述有限。因此，本研究的目的是描述自闭症成年人报告的初级保健就诊的障碍和促进因素。
方法
对洛杉矶和费城的34名自闭症成年人进行了访谈，平均持续26分钟，逐字转录，并使用主题分析进行分析。该数据集是一项更大规模研究的一部分，该研究对自闭症成年人、照顾者和初级保健提供者进行了访谈。
结果
参与者主要是白人、非西班牙裔，平均年龄为32岁。访谈中出现了五个总体主题，描述了改善护理的挑战和潜在策略：（1） ，（2） ，（3） ，（4） 和（5） ，同时强调了为自闭症成年人量身定制护理以改善初级保健体验的重要性。具体在沟通和自闭症特定知识主题方面的结果与自闭症的神经多样性模型一致，因为参与者强调耻辱感和相互沟通是关键的医疗保健障碍。
结论
研究结果提供了对自闭症成年参与者初级保健经历的细致入微的理解，突出了他们对这些医疗保健就诊的障碍和促进因素的看法。这些结果为改善自闭症患者的医疗可及性和质量提供了有价值的见解，其中许多见解切实可行、成本低/无成本且易于实施。策略还强调了自闭症患者经历和偏好的多样性，突出了在初级保健环境中量身定制便利措施的重要性。
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