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Patients’ and family members’ views on how clinicians enact and how they should enact incident disclosure: the “100 patient stories” qualitative study

BMJ 2011; 343 doi: https://doi.org/10.1136/bmj.d4423 (Published 25 July 2011) Cite this as: BMJ 2011;343:d4423
  1. Rick Iedema, professor (organisational communication) and director1,
  2. Suellen Allen, postdoctoral fellow and visiting research fellow1,
  3. Kate Britton, research fellow and PhD candidate1,
  4. Donella Piper, lecturer (law)1,
  5. Andrew Baker, deputy director clinical governance Sydney West Area Health Service1,
  6. Carol Grbich, professor (sociology)2,
  7. Alfred Allan, professor (psychology)3,
  8. Liz Jones, associate professor (social psychology)4,
  9. Anthony Tuckett, senior lecturer (nursing)5,
  10. Allison Williams, research fellow (nursing)6,
  11. Elizabeth Manias, professor (nursing)6,
  12. Thomas H Gallagher, associate professor (medicine)7
  1. 1Centre for Health Communication, PO Box 123, Broadway NSW 2007, University of Technology Sydney, Sydney, Australia
  2. 2School of Medicine, Flinders University, Adelaide SA, Australia
  3. 3School of Psychology and Social Science, Edith Cowan University, Joondalup WA 6027, Australia
  4. 4School of Psychology, Griffith University, Brisbane, Australia
  5. 5School of Nursing and Midwifery, University of Queensland, Brisbane QLD 4072, Australia
  6. 6Department of Nursing, Melbourne School of Health Sciences, University of Melbourne, Carlton VIC 3010, Australia
  7. 7University of Washington Medical Center, Seattle, WA 98195, USA
  1. Correspondence to: R Iedema r.iedema{at}uts.edu.au
  • Accepted 27 May 2011

Abstract

Objectives To investigate patients’ and family members’ perceptions and experiences of disclosure of healthcare incidents and to derive principles of effective disclosure.

Design Retrospective qualitative study based on 100 semi-structured, in depth interviews with patients and family members.

Setting Nationwide multisite survey across Australia.

Participants 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%).

Main outcome measures 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.

Footnotes

  • We thank the patients and family members who contributed to this study. We thank the Open Disclosure Advisory Group for their wisdom and encouragement during the project. We thank the people at the participating health services and human research ethics committees who saw merit in this work and allowed us access to patients who were harmed by a healthcare incident. We also thank those who contributed to the research as colleagues.

  • Contributors: RI oversaw the research project, analysed data, and synthesised findings. SA managed the day to day components of the project, conducted most of the interviews, assisted in data analysis, and arranged the national stakeholder feedback process. KB assisted in project management; arranging, conducting, and filming the interviews; and carrying out data analysis. DP assisted in conducting the interviews, providing legal advice, and doing data analysis and participated in the national stakeholder process scrutinising and structuring study findings. AB assisted in conducting the interviews, advising project staff on everyday practicalities of incident disclosure, and participated in the national stakeholder process scrutinising and structuring study findings. CG provided research methodological advice and participated in the national stakeholder process scrutinising and structuring study findings. AA assisted in exploring and clarifying the apology dimensions of incident disclosure. LJ assisted in conducting the interviews and participated in the national stakeholder process scrutinising and structuring study findings. AT assisted in conducting interviews. AW assisted in conducting interviews and participated in the national stakeholder process scrutinising and structuring study findings. EM participated in the national stakeholder process scrutinising and structuring study findings. THG acted as consultant to the project and participated in scrutinising and structuring study findings. All authors, external and internal, had full access to all of the data (including statistical reports and tables) in the study and can take responsibility for the integrity of the data and the accuracy of the data analysis.

  • Funding: Funding for this study was awarded by the Australian Commission on Safety and Quality in Health Care.

  • Competing interests: All authors have completed the Unified Competing Interest form at www.icmje.org/coi_disclosure.pdf and declare they had: funding for this study from the Australian Commission on Safety and Quality in Health Care; no financial relationships with any organisations that might have an interest in the submitted work in the previous three years; no other relationships or activities that could appear to have influenced the submitted work.

  • Ethical approval: Approval was obtained from the universities in the project consortium and the health services involved in the study. The consortium’s lead university’s approval code is UTS HREC 2008/300.

  • Study design: The study was designed by the Australian Commission on Safety and Quality in Health Care.

  • Data sharing: No additional data available. DVDs produced from the project will be available in 2012.

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