通过与外科医生协作式互动，增强小儿外科肿瘤患者父母的能力。
Empowering Parents of Pediatric Surgical Oncology Patients Through Collaborative Engagement with Surgeons.
机构信息
University of Iowa Hospitals and Clinics, Department of Surgery, Division of Pediatric Surgery, Iowa City, IA, USA; University of Iowa Carver College of Medicine, Program in Bioethics and Humanities, Iowa City, IA, USA.
University of Iowa Carver College of Medicine, Program in Bioethics and Humanities, Iowa City, IA, USA.
出版信息
J Pediatr Surg. 2023 Sep;58(9):1736-1743. doi: 10.1016/j.jpedsurg.2022.12.029. Epub 2022 Dec 31.
BACKGROUND
Ninety percent of parents of pediatric oncology patients report distressing, emotionally burdensome healthcare interactions. Assuring supportive, informative treatment discussions may limit parental distress. Here, we interview parents of pediatric surgical oncology patients to better understand parental preferences for surgical counseling.
METHODS
We interviewed 10 parents of children who underwent solid tumor resection at a university-based, tertiary children's hospital regarding their preferences for surgical discussions. Thematic content analysis of interview transcripts was performed using deductive and inductive methods.
RESULTS
Three main themes were identified: (1) the emotional burden of a pediatric cancer diagnosis; (2) complexities of treatment discussions; (3) collaborative engagement between parents and surgeons. Within the collaborative engagement theme, there were four sub-themes: (1) variable informational needs; (2) parents as advocates; (3) parents as gatekeepers of information delivery to their children, family, friends, and community; (4) parental receptivity to structured guidance to support treatment discussions. Two cross-cutting themes were identified: (1) perception that no treatment decision needed to be made regarding surgery and (2) reliance on diverse support resources.
CONCLUSIONS
Parents feel discussions with surgeons promote informed involvement in their child's care, but they recognize that there may be few decisions to make regarding surgery. Even when parents perceive that there are there are no decisions to make, they prioritize asking questions to advocate for their children. The emotional burden of a cancer diagnosis often prevents parents from knowing what questions to ask. Merging this data with our prior pediatric surgeon interviews will facilitate development of a novel decision support tool that can empower parents to ask meaningful questions.
LEVEL OF EVIDENCE
III.
背景
90%的儿科肿瘤患者的家长报告说，他们在医疗保健方面的互动令人痛苦，情绪负担沉重。确保支持性和信息性的治疗讨论可能会限制家长的痛苦。在这里，我们采访了儿科外科肿瘤患者的家长，以更好地了解他们对手术咨询的偏好。
方法
我们采访了 10 位在一所大学附属的三级儿童医院接受实体瘤切除术的儿童的家长，了解他们对手术讨论的偏好。使用演绎和归纳方法对访谈记录进行主题内容分析。
结果
确定了三个主要主题：（1）儿科癌症诊断的情绪负担；（2）治疗讨论的复杂性；（3）家长和外科医生之间的协作参与。在协作参与主题中，有四个子主题：（1）信息需求的变化；（2）家长作为倡导者；（3）家长作为向孩子、家人、朋友和社区传递信息的把关人；（4）家长对支持治疗讨论的结构化指导的接受程度。确定了两个交叉主题：（1）对手术治疗无需做出任何决定的看法；（2）依赖各种支持资源。
结论
家长们认为与外科医生的讨论促进了他们对孩子护理的知情参与，但他们认识到，手术方面可能没有什么决定需要做。即使家长认为没有什么决定需要做，他们也会优先提问，为孩子争取权益。癌症诊断的情绪负担常常使家长不知道该问什么问题。将这些数据与我们之前的儿科外科医生访谈结合起来，将有助于开发一种新的决策支持工具，使家长能够提出有意义的问题。
证据水平
III。
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