Department of Pediatrics Children's Hospital Los Angeles, Los Angeles, CA.
Department of Surgery, Washington University School of Medicine, St. Louis, MO.
Chest. 2012 Dec;142(6):1433-1439. doi: 10.1378/chest.11-3199.
We undertook the current investigation to explore how the pressures of serving as a surrogate decision-maker (SDM) for an acutely ill family member influence attitudes regarding clinical investigation.
We conducted a prospective study involving SDMs for critically ill patients cared for in the ICUs of two urban hospitals. Measurements included participation in focus groups designed to explore perceptions of ICU care and clinical research. Audiotapes were transcribed and analyzed to identify common patterns and themes using grounded theory. Demographic and clinical data were summarized using standard statistical methods.
Seventy-four SDMs (corresponding to 24% of eligible patients) participated. Most SDMs were women and described long-term relationships with the patients represented. SDMs described their role as "overwhelming," their emotions were accentuated by the fatigue of the ICU experience, and they relied on family members, social contacts, and religion as sources of support. Altruism was reported as a common motivation for potential study participation, a sentiment often strengthened by the critical illness episode. Although research was viewed as optional, some SDMs perceived invitation for research participation as tacit acknowledgment of therapeutic failure. SDMs expressed a preference for observational studies (perceived as low risk) over interventional designs (perceived as higher risk). Trust in the ICU team and the research enterprise seemed tightly linked.
Despite significant emotional duress, SDMs expressed interest in investigation and described multiple factors motivating participation. Consent processes that minimize the effects of anxiety may be one strategy to enhance recruitment.
本研究旨在探讨作为急性重病患者的代理决策人（SDM）所承受的压力如何影响其对临床研究的态度。
我们进行了一项前瞻性研究，纳入了在两家城市医院 ICU 接受治疗的重病患者的 SDM。测量包括参与焦点小组，以探讨对 ICU 护理和临床研究的看法。使用扎根理论对录音带进行转录和分析，以识别常见模式和主题。使用标准统计方法总结人口统计学和临床数据。
74 名 SDM（占合格患者的 24%）参与了研究。大多数 SDM 为女性，描述了与所代表患者的长期关系。SDM 描述他们的角色“压倒性”，他们的情绪因 ICU 经历的疲劳而加剧，他们依赖家人、社交联系和宗教作为支持的来源。利他主义被报告为潜在研究参与的常见动机，这种情绪常常因重病发作而增强。尽管研究被视为可选的，但一些 SDM 认为邀请参与研究是对治疗失败的默许承认。SDM 表示更喜欢观察性研究（被认为风险较低）而不是干预性设计（被认为风险较高）。对 ICU 团队和研究企业的信任似乎紧密相连。
尽管面临巨大的情绪压力，SDM 仍对调查表示了兴趣，并描述了多种激励参与的因素。减少焦虑影响的同意过程可能是增强招募的一种策略。
