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.
- critical care
- patient-centred care
- patient safety
- safety culture
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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.
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