title: Does difficulty functioning in the surrogate role equate to vulnerability in critical illness research? Use of path analysis to examine the relationship between difficulty providing substituted judgment and receptivity to critical illness research participation.
abstract: OBJECTIVE
  Individuals who struggle to provide substitute judgment for the critically ill often find it challenging to engage in decision making for therapeutic interventions. Although essential to the conduct of research, how these individuals respond to requests for clinical trial participation is poorly understood.
  
  
  METHODS
  Survey data collected to examine surrogate attitudes toward research provided the conceptual framework to explore influences on decision making. Path analysis was used to derive the final model (nonlatent, fully recursive, 1 indicator/variable).
  
  
  RESULTS
  Surrogates with list-wise complete records (406) were analyzed. The following variables were not retained in the final model: education, income, religiosity, decision-making experience, discussion of patient's wishes, number of individuals assisting with decision making, trust in care providers, difficulty making decisions, and responsibility for decision making. Being white and having experience making treatment decisions for the patient during the current intensive care unit encounter affected the likelihood the surrogate would permit participation in research positively (parameter estimates, 0.281 and 0.06, respectively). No variable reflecting difficulty functioning in the surrogate role was associated with permitting research participation.
  
  
  CONCLUSIONS
  We were unable to demonstrate a relationship between perceived difficulty in decision making in the surrogate role and receptivity to clinical trial participation.
authors: Center for Survey Research, University of Massachusetts-Boston, Boston, MA.
authors: Brian R
authors: BR
authors: Clarridge
authors: Center for Survey Research, University of Massachusetts-Boston, Boston, MA.
authors: Dragana
authors: D
authors: Bolcic-Jankovic
authors: Center for Survey Research, University of Massachusetts-Boston, Boston, MA.
authors: Jessica
authors: J
authors: LeBlanc
authors: Center for Survey Research, University of Massachusetts-Boston, Boston, MA.
authors: Rumel S
authors: RS
authors: Mahmood
authors: Department of Surgery, Washington University School of Medicine, St Louis, MO.
authors: Carie R
authors: CR
authors: Kennedy
authors: Department of Surgery, Washington University School of Medicine, St Louis, MO. Electronic address: freemanb@wustl.edu.
authors: Bradley D
authors: BD
authors: Freeman
mesh_terms: D000328:Adult; D035843:Biomedical Research; D017028:Caregivers / Q000523:psychology*; D003422:Critical Care; D016638:Critical Illness / Q000628:therapy*; D003657:Decision Making; D005260:Female; D006801:Humans; D007600:Judgment; D008297:Male; D008875:Middle Aged; D010358:Patient Participation / Q000523:psychology*
keywords: Biospecimen; Clinical research; Critical illness; Path analysis; Substituted judgment; Surrogate decision maker