Oslin Ellie, Montenegro Roberto E, Kraft Stephanie A, Van Cleave Alisa, Bogetz Jori
Treuman Katz Center for Pediatric Bioethics and Palliative Care, Center of Clinical and Translational Research, Seattle Children's Research Institute, 1900 Ninth Ave., MS: JMB-6, Seattle, WA, USA 98101; Department of Clinical Psychology, University of Wisconsin, Milwaukee, 2441 E Hartford Ave, Milwaukee, WI, USA 53211.
Division of Psychiatry and Behavioral Sciences, University of Washington School of Medicine, 1959 NE Pacific St, Seattle, WA 98195, USA; Division of Bioethics and Palliative Care, Department of Pediatrics, University of Washington School of Medicine, M/S MB.5.605, PO Box 5371, Seattle, WA 98105, USA.
Disabil Health J. 2025 Jan;18(1):101691. doi: 10.1016/j.dhjo.2024.101691. Epub 2024 Aug 23.
Children with severe neurological impairment (SNI) are at heightened risk of experiencing medical ableism from clinicians in the pediatric intensive care unit (PICU), where barriers such as time scarcity and heavy workloads limit clinicians' ability to provide personalized care.
To examine medical ableism and strategies to support PICU clinicians in understanding the lives of children with SNI and their families.
This US-based, single-center, qualitative study included PICU clinicians identified by the parents/caregivers of a child with SNI. Semi-structured 1:1 60-min interviews about the challenges of caring for children with SNI were conducted virtually. Coded data were extracted, thematically analyzed, and further conceptualized using the Dual Process Theory (DPT) bias reduction framework.
Nineteen PICU clinicians participated. Three major themes emerged: 1) assumptions and misconceptions about children with SNI and their families, 2) barriers to providing personalized care, and 3) clinician-suggested strategies to honor the lives of children with SNI. These themes aligned with the DPT framework. As outlined in the DPT, system 1 "fast thinking" errors occur when quick observations inform decisions (e.g., snap judgments about a child's capabilities). Second, barriers (e.g., insufficient time for meaningful interactions) may prevent clinicians from providing unbiased care. Third, system 2 "slow thinking," where complex decision-making occurs, and can be enhanced through personalization strategies (e.g., viewing visuals of the child at baseline health).
Increasing clinician awareness of their potential implicit biases and utilizing bias reduction strategies to mitigate medical ableism in care are critical areas for future research.
患有严重神经功能障碍(SNI)的儿童在儿科重症监护病房(PICU)面临着来自临床医生的医疗能力歧视风险增加,在该病房,时间稀缺和工作量大等障碍限制了临床医生提供个性化护理的能力。
研究医疗能力歧视以及支持PICU临床医生了解患有SNI的儿童及其家庭生活的策略。
这项基于美国的单中心定性研究纳入了由患有SNI的儿童的父母/照顾者确定的PICU临床医生。通过虚拟方式进行了关于照顾患有SNI的儿童的挑战的60分钟一对一的半结构化访谈。提取编码数据,进行主题分析,并使用双加工理论(DPT)偏差减少框架进一步概念化。
19名PICU临床医生参与了研究。出现了三个主要主题:1)对患有SNI的儿童及其家庭的假设和误解,2)提供个性化护理的障碍,3)临床医生建议的尊重患有SNI的儿童生活的策略。这些主题与DPT框架一致。如DPT所述,当快速观察为决策提供信息时(例如,对孩子能力的快速判断),系统1“快速思考”错误就会发生。其次,障碍(例如,没有足够的时间进行有意义的互动)可能会阻止临床医生提供无偏见的护理。第三,系统2“慢速思考”,即发生复杂决策的过程,可以通过个性化策略(例如,查看孩子基线健康时的图像)得到加强。
提高临床医生对其潜在隐性偏见的认识,并利用偏差减少策略来减轻护理中的医疗能力歧视,是未来研究的关键领域。