Elucidating the Perspectives of Autistic Youth About Their Health Care Experiences: A Qualitative Study.
Elucidating the Perspectives of Autistic Youth About Their Health Care Experiences: A Qualitative Study.
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阐明自闭症青少年对其医疗保健经历的看法：一项定性研究。
DOI：
10.1097/dbp.0000000000001228
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发表时间：
2024
期刊：
影响因子：
--
通讯作者：
Krauss,Shari
中科院分区：
文献类型：
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作者：
O'Hagan,Belinda;Foster,Sarah;Ursitti,Amy;Crable,ErikaL;Friedman,AlexanderJ;Bartolotti,Lauren;Krauss,Shari
目的：自闭症患者有较高的比率，共同发生的医疗条件和服务的使用。然而，自闭症患者及其家庭对医疗服务的满意度也较低。以前的研究描述了自闭症成年人的医疗保健经验，但对自闭症青少年和年轻人的了解较少。本研究旨在定性描述自闭症青少年的保健经验。方法：采用四个纵向/系列焦点小组，8名自闭症青少年和年轻人。参与者是自闭症患者咨询委员会的成员，该委员会是一家大型城市安全网医院更广泛倡议的一部分，旨在改善自闭症患者的医疗保健体验。焦点小组会议是以虚拟方式进行的，并进行了录音。对录音进行了转录并核实其准确性。成绩单的共识编码与归纳的方法，使用扎根theorety.Results的原则：调查结果包括4个反复出现的主题：可及性和住宿，卫生服务使用的障碍，病人参与医疗保健决策，和促进者的病人-临床医生的关系。与会者指出，访问准备，感官项目，并与临床医生反复积极的互动是有帮助的，以建立一个积极的医疗保健experience.Conclusion：我们的研究结果支持以前的研究，建议需要个性化的护理，确保住宿的可用性，在实践中的灵活性，只要有可能，并增加医疗保健专业知识，这个独特的病人群体。
Objectives:Autistic individuals have higher rates of co-occurring medical conditions and service use. However, autistic individuals and their families also reported lower satisfaction with health care service delivery. Previous studies described health care experiences of autistic adults, but less is known about those of autistic adolescents and young adults. This study aimed to qualitatively describe the health care experiences of autistic youth.Methods:Four longitudinal/serial focus groups were conducted with 8 autistic adolescents and young adults. Participants were members of an autistic patient advisory board, which is part of a broader initiative at a large, urban, safety-net hospital to improve the health care experiences of autistic patients. Focus groups were conducted virtually and were audio-recorded. Audio recordings were transcribed and verified for accuracy. Transcripts were consensus-coded with an inductive approach using tenets of grounded theory.Results:Findings included 4 recurring themes: accessibility and accommodations, barriers of health service use, patient involvement in health care decisions, and facilitators of patient-clinician relationship. Participants noted that visit preparation, sensory items, and repeated positive interactions with clinician were helpful to build a positive health care experience.Conclusion:Our findings support previous research that suggest the need to individualize care, ensure availability of accommodations, apply flexibility in practice whenever possible, and increase health care professional knowledge about this unique patient population.