School of Medicine, Duke University, Durham, NC, USA.
Pediatrics Residency Program, University of Pittsburgh Medical Center, 4401 Penn Avenue, Pittsburgh, 15224, PA, USA.
BMC Palliat Care. 2018 Sep 12;17(1):107. doi: 10.1186/s12904-018-0360-y.
Medical advances have led to new challenges in decision-making for parents of seriously ill children. Many parents say religion and spirituality (R&S) influence their decisions, but the mechanism and outcomes of this influence are unknown. Health care providers (HCPs) often feel unprepared to discuss R&S with parents or address conflicts between R&S beliefs and clinical recommendations. Our study sought to illuminate the influence of R&S on parental decision-making and explore how HCPs interact with parents for whom R&S are important.
A longitudinal, qualitative, descriptive design was used to (1) identify R&S factors affecting parental decision-making, (2) observe changes in R&S themes over time, and (3) learn about HCP perspectives on parental R&S. The study sample included 16 cases featuring children with complex life-threatening conditions. The length of study for each case varied, ranging in duration from 8 to 531 days (median = 380, mean = 324, SD = 174). Data from each case included medical records and sets of interviews conducted at least monthly with mothers (n = 16), fathers (n = 12), and HCPs (n = 108). Thematic analysis was performed on 363 narrative interviews to identify R&S themes and content related to decision-making.
Parents from 13 cases reported R&S directly influenced decision-making. Most HCPs were unaware of this influence. Fifteen R&S themes appeared in parent and HCP transcripts. Themes most often associated with decision-making were Hope & Faith, God is in Control, Miracles, and Prayer. Despite instability in the child's condition, these themes remained consistently relevant across the trajectory of illness. R&S influenced decisions about treatment initiation, procedures, and life-sustaining therapy, but the variance in effect of R&S on parents' choices ultimately depended upon other medical & non-medical factors.
Parents consider R&S fundamental to decision-making, but apply R&S concepts in vague ways, suggesting R&S impact how decisions are made more than what decisions are made. Lack of clarity in parental expressions of R&S does not necessarily indicate insincerity or underestimation of the seriousness of the child's prognosis; R&S can be applied to decision-making in both functional and dysfunctional ways. We present three models of how religious and spiritual vagueness functions in parental decision-making and suggest clinical applications.
医学进步给重病患儿的父母带来了新的决策挑战。许多父母表示，宗教和精神信仰（R&S）影响了他们的决策，但这种影响的机制和结果尚不清楚。医疗保健提供者（HCPs）往往觉得准备不足，无法与父母讨论 R&S，也无法解决 R&S 信仰与临床建议之间的冲突。我们的研究旨在阐明 R&S 对父母决策的影响，并探讨 HCPs 如何与 R&S 对父母重要的父母互动。
采用纵向、定性、描述性设计，（1）确定影响父母决策的 R&S 因素，（2）观察 R&S 主题随时间的变化，（3）了解 HCP 对父母 R&S 的看法。研究样本包括 16 例患有复杂危及生命疾病的儿童。每个病例的研究时间长短不一，持续时间从 8 天到 531 天不等（中位数=380，均值=324，标准差=174）。每个病例的数据包括病历和至少每月一次与母亲（n=16）、父亲（n=12）和 HCP（n=108）进行的一组访谈。对 363 篇叙事访谈进行了主题分析，以确定与决策相关的 R&S 主题和内容。
来自 13 个案例的父母表示 R&S 直接影响决策。大多数 HCP 对此影响一无所知。15 个 R&S 主题出现在父母和 HCP 的记录中。与决策最相关的主题是希望与信仰、上帝在掌控、奇迹和祈祷。尽管孩子的病情不稳定，但这些主题在疾病的整个过程中始终保持相关。R&S 影响了治疗开始、程序和维持生命治疗的决策，但 R&S 对父母选择的影响差异最终取决于其他医疗和非医疗因素。
父母认为 R&S 是决策的基础，但以模糊的方式应用 R&S 概念，表明 R&S 影响决策的方式多于决策的内容。父母对 R&S 的表达缺乏明确性并不一定表明他们不真诚或低估孩子的预后严重程度；R&S 可以以功能和非功能的方式应用于决策。我们提出了父母决策中宗教和精神模糊性起作用的三种模式，并提出了临床应用。
