@article{45f5039283c549aa813cf3ff265354d0,
title = "Surrogate Decision Maker Stress in Advance Care Planning Conversations: A Mixed-Methods Analysis From a Randomized Controlled Trial",
abstract = "Context: 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. Objectives: To explore if and how spokespersons perceive stress related to ACP conversations; compare factors related to stress; and assess whether ACP intervention impacted stress. Methods: 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). Results: 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. Conclusion: 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.",
author = "Daniella Lipnick and Michael Green and Elizabeth Thiede and Smith, {Theresa J.} and Lehman, {Erik B.} and Rhonda Johnson and La, {In Seo} and Debra Wiegand and Levi, {Benjamin H.} and {Van Scoy}, {Lauren J.}",
note = "Funding Information: Funding: Research reported in this publication was supported by the National Institute of Nursing Research of the National Institutes of Health , under award number 5R01 NR012757-08 . Funding Information: The authors thank the patients and their loved ones who participated in this study, without whom this new knowledge would not be possible. They thank the following individuals for their contributions to this work: Renee Stewart, Alyssa Harlow, Jorge Durante, Lisa Lehmann, and Andrew Foy. The authors also honor the memory of coauthor, colleague, and friend Debra Wiegand, PhD, RN, who contributed to this work but passed away before the completion of this article. Two authors, Dr. Michael Green and Dr. Benjamin Levi, are the cocreators of the decision aid, Making Your Wishes Known, which was developed for research purposes and used free of charge. A commercial version of the decision aid called My Living Voice is owned by vital decisions, and Drs. Green and Levi have a financial interest in its success through a consulting arrangement with vital decisions. All research involving Making Your Wishes Known or My Living Voice is carefully monitored by Penn State's Institutional Review Board and Conflict of Interest Review Committee. Funding: Research reported in this publication was supported by the National Institute of Nursing Research of the National Institutes of Health, under award number 5R01 NR012757-08. Trial registration: ClinicalTrials.gov identifier: NCT02429479. Publisher Copyright: {\textcopyright} 2020 American Academy of Hospice and Palliative Medicine",
year = "2020",
month = dec,
doi = "10.1016/j.jpainsymman.2020.07.001",
language = "English (US)",
volume = "60",
pages = "1117--1126",
journal = "Journal of Pain and Symptom Management",
issn = "0885-3924",
publisher = "Elsevier Inc.",
number = "6",
}