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Original research
Speaking up about care concerns in the ICU: patient and family experiences, attitudes and perceived barriers
  1. Sigall K Bell1,
  2. Stephanie D Roche2,
  3. Ariel Mueller3,
  4. Erica Dente4,
  5. Kristin O’Reilly2,5,
  6. Barbara Sarnoff Lee6,
  7. Kenneth Sands1,2,5,
  8. Daniel Talmor3,5,
  9. Samuel M Brown7,8
  1. 1 Department of Medicine, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, Massachusetts, USA
  2. 2 Department of Health Care Quality, Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA
  3. 3 Department of Anesthesia, Critical Care and Pain Medicine, Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA
  4. 4 Patient and Family Advisory Council, Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA
  5. 5 Center for Healthcare Delivery Science, Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA
  6. 6 Department of Social Work, Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA
  7. 7 Center for Humanizing Critical Care, Intermountain Medical Center, Murray, Utah, USA
  8. 8 Department of Internal Medicine, University of Utah School of Medicine, Salt Lake City, Utah, USA
  1. Correspondence to Dr Sigall K Bell, Department of Medicine, Beth Israel Deaconess Medical Center, Boston, MA 02215, USA; sbell1{at}bidmc.harvard.edu

Abstract

Background Little is known about patient/family comfort voicing care concerns in real time, especially in the intensive care unit (ICU) where stakes are high and time is compressed. Experts advocate patient and family engagement in safety, which will require that patients/families be able to voice concerns. Data on patient/family attitudes and experiences regarding speaking up are sparse, and mostly include reporting events retrospectively, rather than pre-emptively, to try to prevent harm. We aimed to (1) assess patient/family comfort speaking up about common ICU concerns; (2) identify patient/family-perceived barriers to speaking up; and (3) explore factors associated with patient/family comfort speaking up.

Methods In collaboration with patients/families, we developed a survey to evaluate speaking up attitudes and behaviours. We surveyed current ICU families in person at an urban US academic medical centre, supplemented with a larger national internet sample of individuals with prior ICU experience.

Results 105/125 (84%) of current families and 1050 internet panel participants with ICU history completed the surveys. Among the current ICU families, 50%–70% expressed hesitancy to voice concerns about possible mistakes, mismatched care goals, confusing/conflicting information and inadequate hand hygiene. Results among prior ICU participants were similar. Half of all respondents reported at least one barrier to voicing concerns, most commonly not wanting to be a ‘troublemaker’, ‘team is too busy’ or ‘I don’t know how’. Older, female participants and those with personal or family employment in healthcare were more likely to report comfort speaking up.

Conclusion Speaking up may be challenging for ICU patients/families. Patient/family education about how to speak up and assurance that raising concerns will not create ‘trouble’ may help promote open discussions about care concerns and possible errors in the ICU.

  • communication
  • critical care
  • patient-centred care
  • patient safety
  • safety culture

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

https://doi.org/10.1136/bmjqs-2017-007525

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    Footnotes

    • SKB and SDR contributed equally.

    • Contributors SKB, SMB: study conception; SDR: data acquisition; SKB, SDR, ALM, SMB: data analysis; SKB, SDR: manuscript writing. All authors had access to the data and critically revised the manuscript. SKB and SDR affirm that this manuscript is an honest, accurate and transparent account of the study being reported; that no important aspects of the study have been omitted; and that any discrepancies from the study as planned have been explained.

    • Funding This study was funded by Gordon and Betty Moore Foundation (10.13039/100000936).

    • Disclaimer The content is solely the responsibility of the authors and does not represent the official views of the funding agency, which had no role in the design and conduct of the study; the collection, management, analysis and interpretation of the data; or the preparation, review or approval of the manuscript.

    • Competing interests None declared.

    • Patient consent Not required.

    • Ethics approval The Institutional Review Board (IRB) of Beth Israel Deaconess Medical Center approved this study.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data sharing statement No additional data available.