Kukora Stephanie K, Ryan Kerry, Yan Haoyang, Clarke Rachel, Arslanian-Engoren Cynthia, Pituch Kenneth
Division of Neonatology and Bioethics Center, Childrens Mercy Kansas City, Kansas City, MO, United States of America.
Center for Bioethics and Social Sciences in Medicine, University of Michigan, Ann Arbor, MI, United States of America.
PEC Innov. 2025 Jun 24;7:100412. doi: 10.1016/j.pecinn.2025.100412. eCollection 2025 Dec.
To develop a clinical, bedside intervention with peer parent narratives to help parents understand the shared decision-making (SDM) process, their role in the decision, and other parents' considerations in this context.
To ensure that the intervention reflected parents' needs, we identified eight parents who had faced a tracheostomy decision for their child and were willing to talk about their experiences on a video recording. Half of the parents had chosen tracheostomy; some children of parents making either choice had died. We included parents of diverse racial backgrounds whose children had different diagnoses. Parent interviews, along with an explanation of SDM for parents, were edited into a 17-min video guided by iterative feedback from parents and clinicians. Additional parents of children with tracheostomies then viewed the video and shared perceptions about acceptability.
After an iterative process of developing the video in partnership with parents, we piloted the video with 18 parents in 16 online interviews (two were couples) who were not part of video development but had faced a tracheostomy decision for their child within the last three years. Participants were asked about their experiences, viewed the video, and provided verbal feedback and reflection on the acceptability of the video and its anticipated clinical use. Interviews were transcribed and qualitatively analyzed, focusing on feedback.
Parents who viewed the video provided generally favorable feedback, describing the video as "helpful," and appreciating the diversity of the cases represented and the perspectives offered. They felt that it could empower parents to ask questions and voice their opinions to the medical team. Parents noted feeling a connection to the emotions expressed by the parents in the video and felt it would help parents facing these decisions to feel less alone.
DISCUSSION/PRACTICAL VALUE: Video education focusing on parents' perspectives may help support the SDM process for pediatric tracheostomy and complement other strategies to support parent engagement. Similar approaches may be valuable in explaining SDM to patients or families facing other serious decisions.
开发一种基于同伴家长叙述的临床床边干预措施，以帮助家长理解共同决策（SDM）过程、他们在决策中的角色以及其他家长在此背景下的考量因素。
为确保干预措施反映家长的需求，我们挑选了八位曾面临为孩子进行气管造口术决策且愿意在视频中分享其经历的家长。其中一半家长选择了气管造口术；做出任一选择的家长的部分孩子已去世。我们纳入了不同种族背景、孩子患有不同疾病的家长。家长访谈以及为家长提供的共同决策解释，在家长和临床医生的反复反馈指导下被编辑成一段17分钟的视频。随后，其他有孩子接受气管造口术的家长观看了该视频，并分享了对其可接受性的看法。
在与家长合作对视频进行反复制作后，我们在16次在线访谈中对18位家长（其中两对是夫妻）进行了视频试用，这些家长未参与视频制作，但在过去三年内曾面临为孩子进行气管造口术的决策。参与者被问及他们的经历，观看视频，并就视频的可接受性及其预期的临床用途提供口头反馈和思考。访谈内容被转录并进行定性分析，重点关注反馈意见。
观看视频的家长普遍给予了积极反馈，称该视频“有帮助”，并赞赏所展示案例的多样性以及提供的观点。他们认为这可以使家长有能力向医疗团队提问并表达自己的意见。家长们指出，他们能与视频中家长所表达的情感产生共鸣，并觉得这将有助于面临这些决策的家长减少孤独感。
讨论/实际价值：聚焦家长视角的视频教育可能有助于支持小儿气管造口术的共同决策过程，并补充其他支持家长参与的策略。类似方法对于向面临其他重大决策的患者或家庭解释共同决策可能也有价值。
