Lipnick Daniella, Green Michael, Thiede Elizabeth, Smith Theresa J, Lehman Erik B, Johnson Rhonda, La In Seo, Wiegand Debra, Levi Benjamin H, Van Scoy Lauren J
Penn State College of Medicine, Penn State Milton S. Hershey Medical Center, Hershey, Pennsylvania, USA.
Department of Humanities, Penn State College of Medicine, Penn State Milton S. Hershey Medical Center, Hershey, Pennsylvania, USA; Department of Medicine, Penn State College of Medicine, Penn State Milton S. Hershey Medical Center, Hershey, Pennsylvania, USA.
J Pain Symptom Manage. 2020 Dec;60(6):1117-1126. doi: 10.1016/j.jpainsymman.2020.07.001. Epub 2020 Jul 6.
Spokespersons serving as surrogate decision makers for their loved ones report high levels of stress. Despite known benefits, advance care planning (ACP) conversations often do not occur. More information is needed to understand spokesperson stress during ACP.
To explore if and how spokespersons perceive stress related to ACP conversations; compare factors related to stress; and assess whether ACP intervention impacted stress.
Secondary and mixed-methods analysis with data transformation of semistructured interviews occurring during a 2 × 2 factorial (four armed) randomized controlled trial that compared standard online ACP to a comprehensive online ACP decision aid. Tools were completed by patients with advanced illness (n = 285) alone or with their spokesperson (n = 285). About 200 spokesperson interviews were purposively sampled from each of the four arms (50 per arm).
ACP conversations were reported as stressful by 54.41% (74 of 136) and nonstressful by 45.59% (62 of 136). Five themes impacting spokesperson stress were the nature of the relationship with their loved one; self-described personality and belief systems; knowledge and experience with illness and ACP conversations; attitude toward ACP conversations; and social support in caregiving and decision making. No significant differences in stress were associated with arm assignment.
Identifying what factors impact spokesperson stress in ACP conversations can be used to help design ACP interventions to more appropriately address the needs and concerns of spokespersons.
作为亲人替代决策者的发言人报告称压力水平很高。尽管有已知的益处，但预先护理计划（ACP）的对话往往并未发生。需要更多信息来了解ACP过程中发言人的压力情况。
探讨发言人是否以及如何感知与ACP对话相关的压力；比较与压力相关的因素；并评估ACP干预是否会影响压力。
在一项2×2析因（四组）随机对照试验中，对半结构化访谈数据进行二次和混合方法分析及数据转换，该试验将标准在线ACP与综合在线ACP决策辅助工具进行了比较。工具由晚期疾病患者（n = 285）单独或与其发言人（n = 285）完成。从四组中的每组中有意抽取约200次发言人访谈（每组50次）。
54.41%（136人中的74人）报告称ACP对话有压力，45.59%（136人中的62人）报告无压力。影响发言人压力的五个主题是与亲人的关系性质；自我描述的性格和信仰体系；对疾病和ACP对话的知识与经验；对ACP对话的态度；以及在护理和决策方面的社会支持。压力与分组分配无显著差异。
确定在ACP对话中影响发言人压力的因素，可用于帮助设计ACP干预措施，以更恰当地满足发言人的需求和关切。
