Taghizadeh Neda, Heard Gaylene, Davidson Andrew, Williams Katrina, Story David
Anesthesia Trial Group, Murdoch Children's Research Institute, Parkville, Victoria, Australia.
Department of Pediatrics, University of Melbourne, Parkville, Victoria, Australia.
Paediatr Anaesth. 2019 Sep;29(9):927-937. doi: 10.1111/pan.13689. Epub 2019 Aug 26.
Autism Spectrum Disorder is now diagnosed in more than 1% of children in Australia and USA. Children with autism spectrum disorder may have additional health care needs, require more specialized services for their health care, or experience more difficulties during hospital attendance. Customized care for these children may assist in decreasing potentially challenging behaviours during hospitalization. The purpose of this study was to explore the experiences of children with autism spectrum disorder and their caregivers during attendance for day procedures in two hospitals in Melbourne, Australia. Further, the perceptions of their health care providers were explored.
Twenty-nine participants, including 14 health care providers and 15 caregivers of children with autism spectrum disorder, were interviewed within 72 hours of their day procedure attendance at the Royal Children's Hospital and the Royal Dental Hospital in Melbourne, Australia. Interviews were recorded digitally, then transcribed and coded. Mixed quantitative and qualitative methods (content analysis) were used.
Hospital attendance was often stressful. Participants identified a number of facilitating factors including good communication, clear explanations, and friendly attitudes of staff. Flexibility and individualized care of patients (such as avoiding unnecessary blood pressure measurements, and not changing into hospital gowns) were valued. Supportive aids (such as computers or special interest objects), use of social stories, and giving premedication were all considered helpful. Perceived barriers to care included prolonged waiting times for operation date as well as waiting on the day of operation, lack of private space, lack of noninvasive equipment such as cutaneous infrared thermometers, poor communication, and inadequate training of staff about autism spectrum disorder.
Providing optimal care for children with autism spectrum disorder requires a multifaceted approach that may require changes to hospital work flow, staff training, better use of aids (such as tablet computers and social stories), and premedication. Good communication and flexibility are key areas of importance.
在澳大利亚和美国，超过1%的儿童被诊断患有自闭症谱系障碍。患有自闭症谱系障碍的儿童可能有额外的医疗保健需求，需要更专业的医疗服务，或者在住院期间会遇到更多困难。为这些儿童提供定制化护理可能有助于减少住院期间潜在的挑战性行为。本研究的目的是探讨澳大利亚墨尔本两家医院中自闭症谱系障碍儿童及其照顾者在日间手术就诊期间的经历。此外，还探讨了他们的医疗服务提供者的看法。
在澳大利亚墨尔本皇家儿童医院和皇家牙科医院，对29名参与者进行了访谈，其中包括14名医疗服务提供者和15名自闭症谱系障碍儿童的照顾者，访谈在他们日间手术就诊后72小时内进行。访谈进行了数字录音，然后进行转录和编码。采用了定量和定性混合方法（内容分析）。
住院就诊通常压力很大。参与者确定了一些促进因素，包括良好的沟通、清晰的解释以及工作人员友好的态度。重视对患者的灵活性和个性化护理（如避免不必要的血压测量，不更换医院病号服）。支持性辅助工具（如电脑或特殊兴趣物品）、使用社交故事以及给予术前用药都被认为是有帮助的。护理方面的感知障碍包括手术日期等待时间过长以及手术当天的等待、缺乏私人空间、缺乏非侵入性设备（如皮肤红外温度计）、沟通不畅以及工作人员对自闭症谱系障碍的培训不足。
为自闭症谱系障碍儿童提供最佳护理需要多方面的方法，这可能需要改变医院工作流程、进行工作人员培训、更好地使用辅助工具（如平板电脑和社交故事）以及术前用药。良好的沟通和灵活性是重要的关键领域。
