title: Leveraging the lived experience of surrogate decision makers of the seriously ill to develop a decision support intervention.
abstract: BACKGROUND
  Surrogate decision makers of seriously ill patients are frequently asked to make healthcare decisions without evidence-based decision support.
  
  
  OBJECTIVE
  To describe the lived experiences of surrogate decision makers who have made advance care decisions and identify relevant features of a decision support intervention from their perspectives.
  
  
  METHODS
  A convenience sample of surrogate decision makers (n=10) of seriously ill patients discharged to an extended care facility within the past 6 months participated in focus group discussions. Data were analyzed using content analysis.
  
  
  RESULTS
  Three salient themes were identified: (1) limited preparation, (2) decisional and emotional burden, and (3) content and features of a decision support intervention.
  
  
  CONCLUSIONS
  Surrogate decision makers of the seriously ill are not prepared for their new role, and experience decisional and emotional burden. Effective decision support interventions must address the decisional and emotional needs of surrogate decision makers to enhance the quality of their decisions.
authors.affiliation: School of Nursing, Case Western Reserve University, Cleveland, OH. Electronic address: ronald.hickman@case.edu.
authors.forename: Ronald L
authors.initials: RL
authors.lastname: Hickman
authors.affiliation: School of Nursing, Case Western Reserve University, Cleveland, OH.
authors.forename: Barbara J
authors.initials: BJ
authors.lastname: Daly
authors.affiliation: College of Nursing, University of South of Florida, MDC22.
authors.forename: John M
authors.initials: JM
authors.lastname: Clochesy
authors.affiliation: School of Nursing, Case Western Reserve University, Cleveland, OH.
authors.forename: Julia
authors.initials: J
authors.lastname: O'Brien
authors.affiliation: School of Nursing, Case Western Reserve University, Cleveland, OH.
authors.forename: Mary
authors.initials: M
authors.lastname: Leuchtag
mesh_terms: D000208:Acute Disease; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D003657:Decision Making; D006801:Humans; D008875:Middle Aged; D019727:Proxy; D055815:Young Adult
keywords: Intervention development; Qualitative research; Seriously ill patients; Surrogate decision makers