Divisions of Bioethics and Palliative Care.
Treuman Katz Center for Bioethics.
Pediatrics. 2024 Apr 1;153(4). doi: 10.1542/peds.2023-064361.
Parents and family caregivers of children with severe neurologic impairment (SNI) experience many stressors, especially during their child's critical illness. This study aimed to examine parent experiences around the time of their child's PICU care to explore ways parents make meaning in relation to these stressors.
This qualitative study of data from a single center in the United States followed Consolidated Criteria for Reporting Qualitative Research guidelines. One to one semistructured interviews queried parents' psychosocial well-being around the time of their child's PICU care. Eligible participants had a child with an SNI condition for >3 months admitted to the PICU for >24 hours with an expected length of stay >1 week.
Data were analyzed by a research team with expertise in palliative care, psychology, critical care, and qualitative methods. Fifteen family caregivers of 15 children participated. Children were a median of 8 years old (interquartile range 4-11.5) and 80% (n = 12) had congenital/genetic conditions. Parent/family caregivers were a median age of 39 years old (interquartile range 36-42.5); 20% (n = 3) self-identified as fathers and 47% (n = 7) as having to a minority racial background. Parents discussed ongoing meaning-making that occurred through domains of comprehension and purpose, and themes of understanding of other people and the world around them. Subthemes focused on appreciation/acceptance, adaptability/accountability, valuing all lives, and learning/teaching about their child.
Meaning-making may be an opportunity for support in the PICU among parents/family caregivers of children with SNI.
患有严重神经发育障碍（SNI）的儿童的父母和家庭照顾者会经历许多压力源，尤其是在孩子病重期间。本研究旨在探讨父母在孩子 PICU 护理期间的体验，以探索他们应对这些压力源的方式。
本研究采用美国单中心数据进行的定性研究，遵循《定性研究报告统一标准》。对父母在孩子 PICU 护理期间的社会心理福祉进行一对一半结构化访谈。合格的参与者需满足以下条件：孩子患有 SNI 疾病，在 PICU 住院超过 3 个月，预期住院时间超过 1 周，住院时间超过 24 小时。
研究团队由擅长姑息治疗、心理学、重症监护和定性方法的专家进行数据分析。共有 15 名儿童的 15 名家庭照顾者参与了研究。儿童的平均年龄为 8 岁（四分位间距 4-11.5），80%（n=12）患有先天性/遗传性疾病。父母/家庭照顾者的平均年龄为 39 岁（四分位间距 36-42.5）；20%（n=3）为父亲，47%（n=7）为少数族裔背景。父母讨论了通过理解和目的领域以及对周围人和世界的理解主题进行的持续意义建构。子主题集中在欣赏/接受、适应性/责任性、重视所有生命以及对孩子的学习/教学上。
在 PICU 中，对患有 SNI 的儿童的父母/家庭照顾者进行意义建构可能是提供支持的机会。
