Volume 19 Supplement 1

35th International Symposium on Intensive Care and Emergency Medicine

Open Access

Using patient researchers to understand patient and family experiences in ICUs

  • H Stelfox1,
  • E McKenzie1,
  • S Bagshaw2,
  • M Gill1,
  • P Oxland1,
  • D Boulton1,
  • D Oswell1,
  • M Potestio1 and
  • D Niven1
Critical Care201519(Suppl 1):P575


Published: 16 March 2015


With increasing emphasis on patient and family-centred care, it follows that patients and their family members should be included when priorities for improving care are established. We therefore used a novel methodology that employs former patients and family members as researchers to describe the experiences of critically ill patients and their families with ICUs and to identify opportunities for improvement.


Using the patient engagement framework developed by Marlett and Emes, we engaged four former patients and family members trained in qualitative research methods to conduct and analyse semistructured focus groups and interviews with adult patients who had recovered from critical illness and family members of both surviving and deceased patients. Participants were recruited from 13 ICUs in Alberta, Canada. Focus groups and interviews were recorded, transcribed and analysed using phenomenological reduction. Data collection continued until thematic saturation was reached.


Thirty-two participants including patients (n = 11) and family members (n = 21) participated in five focus groups (n = 23 participants) and eight interviews (n = 9 participants). Participants articulated themes reflecting important components of care organised across three phases of the ICU experience; admission to ICU, daily care in ICU and after ICU discharge. Admission to ICU comprised three themes: patient and family transition into ICU, patient and family disorientation upon admission to ICU and preferred staff actions to help patients/ family adapt to the ICU. The daily care phase of ICU consisted of five themes: honouring patient's voices, needing to know, making decisions, culture in ICU and medical care. The experience after ICU discharge comprised two themes: transition from ICU to a hospital ward and long-term effects of critical illness. Participants identified five priorities for improvement: provide families with a guide/navigator; educate providers about the fragility of family trust; improve provider communication skills; inform patients about the long-term effects of critical illness; and develop strategies to facilitate continuity of care between providers.


Patients and family members are an untapped resource and engaging them as researchers is a viable strategy to identify opportunities for quality improvement that are patient and family centred.

Authors’ Affiliations

University of Calgary
University of Alberta


© Stelfox et al.; licensee BioMed Central Ltd. 2015

This article is published under license to BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.