Department of Psychology, University of Michigan, Ann Arbor, MI, USA.
Department of Psychiatry, University of Michigan, Ann Arbor, MI, USA.
Med Decis Making. 2021 Apr;41(3):305-316. doi: 10.1177/0272989X21990693. Epub 2021 Feb 9.
Parents who face goals-of-care tracheostomy decisions may lack an understanding of challenges affecting their child's and family's long-term quality of life (QOL) to accurately forecast possible outcomes for decision making. We sought to examine whether and how parents' narratives of the child's and family's long-term QOL influence parental tracheostomy decisions and forecasting.
We recruited US adult Amazon Mechanical Turk participants ( = 1966) who self-reported having a child (<6 y old) or planning a pregnancy within 5 y. Participants read a vignette about making a tracheostomy decision for their hypothetical neurologically impaired baby. They were randomized to 1 of the following 4 conditions: 1) Baby QOL narratives, 2) Family QOL narratives, 3) Baby QOL + Family QOL narratives, and 4) control: no narratives. They then made a decision about whether or not to pursue tracheostomy, forecasted their concerns about the baby's and family's QOL, reported their values and social norm beliefs about tracheostomy, comfort care, and parental medical decision making, and completed individual differences scales and demographics.
Controlling for individual characteristics, participants in the Baby QOL and Baby QOL + Family QOL conditions were less likely to choose tracheostomy as compared with the control (odds ratio [OR] = 0.38 and 0.25, respectively, < 0.001). Fewer participants in the Family QOL condition chose tracheostomy compared with the control, but this difference was not statistically significant (OR = 0.70, = 0.11). Moreover, narratives increased pessimistic forecasting, which was associated with less interest in tracheostomy.
Narratives clarifying long-term implications of pursuing tracheostomy have the potential to influence forecasting and decisions. Narrative-based interventions may be valuable in other situations in which forecasting errors are common.
面临治疗目标气管切开术决策的父母可能缺乏对影响孩子和家庭长期生活质量（QOL）的挑战的理解，无法准确预测决策的可能结果。我们旨在研究父母对孩子和家庭长期 QOL 的描述是否以及如何影响父母的气管切开术决策和预测。
我们招募了美国成年亚马逊土耳其机器人参与者（n=1966），他们自我报告有孩子（<6 岁）或计划在 5 年内怀孕。参与者阅读了一个关于为他们假设的神经受损婴儿做出气管切开术决策的案例。他们被随机分配到以下 4 个条件之一：1）婴儿 QOL 叙述，2）家庭 QOL 叙述，3）婴儿 QOL + 家庭 QOL 叙述，和 4）对照：无叙述。然后，他们就是否进行气管切开术做出决定，预测他们对婴儿和家庭 QOL 的担忧，报告他们对气管切开术、舒适护理和父母医疗决策的价值观和社会规范信念，并完成个体差异量表和人口统计学信息。
在控制个体特征的情况下，与对照组相比，婴儿 QOL 和婴儿 QOL + 家庭 QOL 条件下的参与者选择气管切开术的可能性较小（比值比[OR]分别为 0.38 和 0.25，均<0.001）。家庭 QOL 条件下选择气管切开术的参与者少于对照组，但差异无统计学意义（OR=0.70，p=0.11）。此外，叙述增加了悲观的预测，这与对气管切开术的兴趣减少有关。
阐明追求气管切开术的长期影响的叙述有可能影响预测和决策。基于叙述的干预措施在其他预测错误常见的情况下可能具有价值。
