Yan Haoyang, Arslanian-Engoren Cynthia, Pituch Kenneth J, Deldin Patricia J, Graham-Bermann Sandra A, Kukora Stephanie K
Department of Psychology, University of Michigan, Ann Arbor, MI 48109, USA.
Department of Family and Community Medicine, Heersink School of Medicine, University of Alabama at Birmingham, Birmingham, AL 35233, USA.
Children (Basel). 2025 Aug 25;12(9):1115. doi: 10.3390/children12091115.
Pediatric tracheostomy decisions are challenging for clinicians and parents, especially when a child's survival/neurodevelopmental outcome is uncertain. Better understanding of parents' values over the decision period is crucial for clinical decision-making. To describe parents' values during tracheostomy decision-making for their critically ill child and to identify opportunities to improve parent-clinician shared decision-making (SDM). We thematically analyzed 12 semi-structured interviews with parents who recently faced a tracheostomy decision for their critically ill child. Three study team members with qualitative expertise reviewed the transcripts, identifying key topics independently. A codebook was developed, and data were coded. Key research questions guided analysis, with findings iteratively reviewed by the study team. We identified parents' values at the three time points: when the decision was introduced, during their deliberations of it, and when the ultimate decision was made. Initially, parents resisted tracheostomy because it threatens normalcy. They valued proof of a need for tracheostomy and information with certainty. As certainty for tracheostomy increased over time, parents' hope focused on reversibility of tracheostomy and improvement in normalcy compared to current status. They concurrently worried about practical issues such as emergencies, home care, and finances. Key considerations driving the final decision included best interest of the child, perceived benefits of tracheostomy compared to its downsides or other options, and potential for better quality of life and longer life. Parents' dynamic values shifting with clinical uncertainty suggests opportunities to improve SDM by attending to parents' individualized needs and managing expectations.
儿科气管造口术的决策对临床医生和家长来说都具有挑战性，尤其是当孩子的生存/神经发育结果不确定时。在决策期间更好地了解家长的价值观对于临床决策至关重要。描述家长在为其重症患儿进行气管造口术决策期间的价值观，并确定改善家长与临床医生共同决策（SDM）的机会。我们对12名最近面临为其重症患儿进行气管造口术决策的家长进行了半结构化访谈，并进行了主题分析。三名具有定性研究专业知识的研究团队成员审查了访谈记录，独立确定关键主题。制定了编码手册，并对数据进行了编码。关键研究问题指导分析，研究团队对研究结果进行了反复审查。我们确定了家长在三个时间点的价值观：当决策被提出时、在他们对决策进行审议期间以及做出最终决策时。最初，家长抵制气管造口术，因为它会威胁到正常状态。他们重视气管造口术必要性的证据以及确定的信息。随着气管造口术确定性的增加，家长的希望集中在气管造口术的可逆性以及与当前状态相比正常状态的改善上。他们同时还担心诸如紧急情况、家庭护理和财务等实际问题。推动最终决策的关键考虑因素包括孩子的最大利益、气管造口术相对于其缺点或其他选择的感知益处，以及更好的生活质量和更长寿命的可能性。家长的动态价值观随着临床不确定性而变化，这表明通过关注家长的个性化需求和管理期望来改善共同决策的机会。
