title: Patients' and family members' views on how clinicians enact and how they should enact incident disclosure: the "100 patient stories" qualitative study.
abstract: OBJECTIVE
  To investigate patients' and family members' perceptions and experiences of disclosure of healthcare incidents and to derive principles of effective disclosure.
  
  
  METHODS
  Retrospective qualitative study based on 100 semi-structured, in depth interviews with patients and family members.
  
  
  METHODS
  Nationwide multisite survey across Australia.
  
  
  METHODS
  39 patients and 80 family members who were involved in high severity healthcare incidents (leading to death, permanent disability, or long term harm) and incident disclosure. Recruitment was via national newspapers (43%), health services where the incidents occurred (28%), two internet marketing companies (27%), and consumer organisations (2%).
  
  
  METHODS
  Participants' recurrent experiences and concerns expressed in interviews.
  
  
  RESULTS
  Most patients and family members felt that the health service incident disclosure rarely met their needs and expectations. They expected better preparation for incident disclosure, more shared dialogue about what went wrong, more follow-up support, input into when the time was ripe for closure, and more information about subsequent improvement in process. This analysis provided the basis for the formulation of a set of principles of effective incident disclosure.
  
  
  CONCLUSIONS
  Despite growing prominence of open disclosure, discussion about healthcare incidents still falls short of patient and family member expectations. Healthcare organisations and providers should strengthen their efforts to meet patients' (and family members') needs and expectations.
authors.affiliation: Centre for Health Communication, PO Box 123, Broadway NSW 2007, University of Technology Sydney, Sydney, Australia. r.iedema@uts.edu.au
authors.forename: Rick
authors.initials: R
authors.lastname: Iedema
authors.forename: Suellen
authors.initials: S
authors.lastname: Allen
authors.forename: Kate
authors.initials: K
authors.lastname: Britton
authors.forename: Donella
authors.initials: D
authors.lastname: Piper
authors.forename: Andrew
authors.initials: A
authors.lastname: Baker
authors.forename: Carol
authors.initials: C
authors.lastname: Grbich
authors.forename: Alfred
authors.initials: A
authors.lastname: Allan
authors.forename: Liz
authors.initials: L
authors.lastname: Jones
authors.forename: Anthony
authors.initials: A
authors.lastname: Tuckett
authors.forename: Allison
authors.initials: A
authors.lastname: Williams
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Manias
authors.forename: Thomas H
authors.initials: TH
authors.lastname: Gallagher
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D001294:Attitude to Health; D001315:Australia; D002648:Child; D002675:Child, Preschool; D035881:Compensation and Redress; D003625:Data Collection; D030881:Disclosure; D005190:Family / Q000523:psychology*; D006801:Humans; D007223:Infant; D019300:Medical Errors / Q000523:psychology*; D008875:Middle Aged; D017060:Patient Satisfaction; D010465:Perception; D010549:Personal Satisfaction; D010817:Physician-Patient Relations; D012944:Social Support; D055815:Young Adult