Peralta Dana, Nanduri Nikhita, Bansal Simran, Rent Sharla, Brandon Debra H, Pollak Kathryn I, Lemmon Monica E
Department of Pediatrics (D.N., S.B., S.R., D.B., M.L.), Duke University School of Medicine, Durham, North Carolina, US.
Duke University (N.N.), Durham, North Carolina, US.
J Pain Symptom Manage. 2025 Jan;69(1):34-43.e1. doi: 10.1016/j.jpainsymman.2024.09.020. Epub 2024 Sep 24.
Spirituality serves as a mechanism to understand and cope with serious illness, yet little is known about how families and clinicians incorporate spirituality in pediatric family conferences.
We sought to characterize the frequency and nature of spiritual statements in conferences between families and clinicians caring for infants with neurologic conditions.
In this descriptive qualitative study, we used an existing dataset of audio-recorded, de-identified, transcribed family conferences of infants with neurologic conditions. Inclusion criteria for infants were 1) age < 1 year, 2) presence of a neurologic condition, and 3) planned conversation about neurologic prognosis or goals of care. We used a content analysis approach to code the data.
68 family conferences were held for 24 infants and 36 parents. Most parents (n = 32/36, 89%) self-identified as spiritual. References to spirituality occurred in the 32% of conferences (n = 22/68). Spiritual discussion included three domains: 1) Spiritual beliefs and practices, 2) Spiritual support, and 3) Parent-child connection as sacred. Clinicians' responses to family member spiritual statements were inconsistent and included providing affirmation, exploring goals of care, and continuing discussion of clinical information.
Spirituality was discussed in approximately one-third of family conferences. Clinician engagement with spirituality discussion was variable. These findings highlight a need for training on when and how to discuss spirituality in conversations with families of seriously ill infants.
精神信仰是理解和应对严重疾病的一种机制，但对于家庭和临床医生如何在儿科家庭会议中纳入精神信仰，我们知之甚少。
我们试图描述在照顾患有神经系统疾病婴儿的家庭与临床医生之间的会议中，精神信仰陈述的频率和性质。
在这项描述性定性研究中，我们使用了一个现有的数据集，该数据集包含了患有神经系统疾病婴儿的家庭会议的音频记录、去识别化转录内容。纳入婴儿的标准为：1）年龄小于1岁；2）患有神经系统疾病；3）计划就神经学预后或护理目标进行讨论。我们采用内容分析方法对数据进行编码。
为24名婴儿和36名家长举行了68次家庭会议。大多数家长（n = 32/36，89%）自认为有精神信仰。在32%的会议（n = 22/68）中提到了精神信仰。精神信仰讨论包括三个领域：1）精神信仰和实践；2）精神支持；3）亲子关系是神圣的。临床医生对家庭成员精神信仰陈述的回应不一致，包括给予肯定、探讨护理目标以及继续讨论临床信息。
大约三分之一的家庭会议讨论了精神信仰。临床医生参与精神信仰讨论的情况各不相同。这些发现凸显了在与患有重病婴儿的家庭交谈时，需要就何时以及如何讨论精神信仰进行培训。
