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Original Research: Critical Care |

Real-time Perspectives of Surrogate Decision-Makers Regarding Critical Illness ResearchPerspectives Regarding Critical Care Research: Findings of Focus Group Participants

Ellen Iverson, MPH; Aaron Celious, PhD; Carie R. Kennedy, RN; Erica Shehane, MPH; Alexander Eastman, MD, MPH; Victoria Warren, RN; Dragana Bolcic-Jankovic, MS; Brian Clarridge, PhD; Bradley D. Freeman, MD
Author and Funding Information

From the Department of Pediatrics (Mss Iverson and Shehane and Dr Celious) Children’s Hospital Los Angeles, Los Angeles, CA; the Department of Surgery (Ms Kennedy and Dr Freeman), Washington University School of Medicine, St. Louis, MO; the Department of Surgery (Dr Eastman and Ms Warren), University of Texas Southwestern Medical Center, Dallas, TX; and the Center for Survey Research (Ms Bolcic-Jankovic and Dr Clarridge), Boston, MA.

Correspondence to: Bradley D. Freeman, MD, Washington University School of Medicine, Department of Surgery, Campus Box 8109, 660 S Euclid Ave, St Louis, MO 63110; e-mail: freemanb@wustl.edu


Portions of this article have been presented in abstract form [Iverson E, Shehane E, Celious A, et al. Crit Care Med. 2010;38(12)(suppl):A732 and Iverson E, Celious A, Kennedy C, et al. Crit Care Med. 2012;39(12)(suppl):A676].

Funding/Support: This project was supported by the US National Institutes of Health/National Institute of General Medicine Sciences [Grant GM080591].

Reproduction of this article is prohibited without written permission from the American College of Chest Physicians. See online for more details.


Chest. 2012;142(6):1433-1439. doi:10.1378/chest.11-3199
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Objective:  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.

Methods:  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.

Results:  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.

Conclusions:  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.


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