title: Parents' reactions to participating in interviews about end-of-life decision making.
abstract: BACKGROUND
  Although in-depth interviewing is well suited to studying the sensitive topic of end-of-life decision making, no reports have been published assessing the effects on parents of participating in interviews regarding end-of-life decision making for critically ill children.
  
  
  OBJECTIVE
  To examine the reactions of pediatric intensive care unit (PICU) patients' parents to interviews on end-of-life decision making for their child.
  
  
  METHODS
  We conducted semistructured interviews on end-of-life decision making with PICU patients' parents from two tertiary care PICUs. We approached 117 parents of 102 patients. Seventy-four parents (63%) of 69 patients participated.
  
  
  RESULTS
  Forty-three parents (61%) described the interview as "a good experience," 20 (29%) as "a neutral experience," and 1 (1%) as "a bad experience." The parent who judged the interview negatively stated that, "It bothers me a little bit because my son is [out] there having difficulties and I'm in here and not out there." Fifty-four of 59 parents (92%) said they would participate in another similar interview. Most parents (92%) felt the medical community should continue research on end-of-life decision making. Themes identified from the responses included: emotional reaction to the interviews; exposure to end-of-life decision-making issues; impact on parents' views; and impact on future end-of-life decision making. Parents' comments suggested that many perceived the interviews as beneficial.
  
  
  CONCLUSIONS
  This study demonstrates the willingness of many parents of critically ill children to participate in study interviews regarding end-of-life decision making, a topic that most parents felt was important and warranted more research.
authors.affiliation: Department of Pediatrics, Children's Memorial Hospital and Northwestern University's Feinberg School of Medicine, Chicago, Illinois 60614, USA. kmichelson@childrensmemorial.org
authors.forename: Kelly Nicole
authors.initials: KN
authors.lastname: Michelson
authors.forename: Tracy K
authors.initials: TK
authors.lastname: Koogler
authors.forename: Kathleen
authors.initials: K
authors.lastname: Skipton
authors.forename: Christine
authors.initials: C
authors.lastname: Sullivan
authors.forename: Joel
authors.initials: J
authors.lastname: Frader
mesh_terms: D000328:Adult; D002648:Child; D046688:Child Mortality; D003657:Decision Making; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D010290:Parents / Q000523:psychology*; D019452:Terminally Ill; D014481:United States