生存极限边缘的预后沟通：一项回顾性混合方法研究

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中文摘要

背景： 尽管过去二十年新生儿护理的进步提高了极早产儿的存活率，但神经发育障碍仍是一个主要关切，长期结局存在相当大的不确定性。因此，在生存极限边缘进行预后咨询具有挑战性，父母与临床医生之间观点的分歧进一步加剧了这一挑战。目的：探讨父母对极早产背景下预后沟通的回顾性解读，以及他们对长期适应和感知儿童福祉的体验。方法：这项回顾性混合方法研究访谈了胎龄23-25周出生婴儿的父母，时间在出院或死亡后5-10年。定性数据采用Braun和Clarke的六阶段主题分析法进行分析，并与从病历中收集的新生儿临床数据整合。结果：共14名父母参与。识别出五个相互关联的主题：逆境铸就、持久的情感负担、眩晕与决策过载、预后沟通的局限以及长期影响。10名存活婴儿的父母中有5名报告，早期讨论主要聚焦于风险，未能充分处理不确定性或潜在的积极轨迹。在出院时被归类为患有严重新生儿疾病的7名婴儿中，有5名在访谈时被其父母评为当前总体福祉良好或极好。在失去孩子的父母中，4名中有3名描述了意义建构和个人转变，体现在“逆境铸就”这一主题中；这些体验可能与创伤后成长的某些方面一致，尽管未正式评估创伤后成长。结论：一些父母认为聚焦风险的预后沟通塑造了他们后续体验的某些方面。透明地呈现风险，同时明确承认不确定性和发育变异性，可能更好地支持家庭度过新生儿期之后。

英文摘要

Background: Although advances in neonatal care over the last two decades have improved survival among extremely preterm infants, neurodevelopmental disabilities remain a major concern with substantial uncertainty regarding long-term outcomes. Prognostic counselling at the limit of viability is therefore challenging, with divergent perspectives between parents and clinicians further contributing to this challenge. Objective: To examine parents' retrospective interpretations of prognostic communication in the context of extreme prematurity and their experiences of long-term adaptation and perceived child well-being. Methods: This retrospective mixed-methods study interviewed parents of infants born at 23-25 weeks' gestation, 5-10 years after discharge or death. Qualitative data were analysed using Braun and Clarke's six-phase thematic approach and integrated with neonatal clinical data collected from medical records. Results: Fourteen parents participated. Five interrelated themes were identified: forged by adversity, enduring emotional toll, vertigo and decisional overload, limits of prognostic communication and long-term impact. Five of ten parents of surviving infants reported that early discussions were predominantly risk-focused and insufficiently addressed uncertainty or potential positive trajectories. Among seven infants classified as having severe neonatal morbidity at discharge, five were rated by their parents as having good or excellent current overall well-being at the time of interview. Among bereaved parents, three of four described meaning-making and personal transformation reflected in the theme 'Forged by adversity'; these experiences may be consistent with aspects of post-traumatic growth, although post-traumatic growth was not formally assessed. Conclusions: Some parents perceived risk-focused prognostic communication as shaping aspects of their subsequent experience. Counselling that transparently presents risks while explicitly acknowledging uncertainty and developmental variability may better support families beyond the neonatal period.