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. 2016 Aug 5;11(8):e0160947.
doi: 10.1371/journal.pone.0160947. eCollection 2016.

Patient and Family Member-Led Research in the Intensive Care Unit: A Novel Approach to Patient-Centered Research

Marlyn Gill  1 , Sean M Bagshaw  2   3 , Emily McKenzie  4 , Peter Oxland  1   2 , Donna Oswell  1 , Debbie Boulton  1 , Daniel J Niven  2   4   5 , Melissa L Potestio  2   4 , Svetlana Shklarov  4 , Nancy Marlett  4 , Henry T Stelfox  2   4   5 ; Critical Care Strategic Clinical Network
Affiliations

Patient and Family Member-Led Research in the Intensive Care Unit: A Novel Approach to Patient-Centered Research

Marlyn Gill et al. PLoS One. .

Abstract

Introduction: Engaging patients and family members as partners in research increases the relevance of study results and enhances patient-centered care; how to best engage patients and families in research is unknown.

Methods: We tested a novel research approach that engages and trains patients and family members as researchers to see if we could understand and describe the experiences of patients admitted to the intensive care unit (ICU) and their families. Former patients and family members conducted focus groups and interviews with patients (n = 11) and families of surviving (n = 14) and deceased (n = 7) patients from 13 ICUs in Alberta Canada, and analyzed data using conventional content analysis. Separate blinded qualitative researchers conducted an independent analysis.

Results: Participants described three phases in the patient/family "ICU journey"; admission to ICU, daily care in ICU, and post-ICU experience. Admission to ICU was characterized by family shock and disorientation with families needing the presence and support of a provider. Participants described five important elements of daily care: honoring the patient's voice, the need to know, decision-making, medical care, and culture in ICU. The post-ICU experience was characterized by the challenges of the transition from ICU to a hospital ward and long-term effects of critical illness. These "ICU journey" experiences were described as integral to appropriate interactions with the care team and comfort and trust in the ICU, which were perceived as essential for a community of caring. Participants provided suggestions for improvement: 1) provide a dedicated family navigator, 2) increase provider awareness of the fragility of family trust, 3) improve provider communication skills, 4) improve the transition from ICU to hospital ward, and 5) inform patients about the long-term effects of critical illness. Analyses by independent qualitative researchers identified similar themes.

Conclusions: Patient and family member-led research is feasible and can identify opportunities for improving care.

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Conflict of interest statement

Competing Interests: The authors have declared that no competing interests exist.

Figures

Fig 1
Fig 1. Flow of focus groups and interviews.
Focus groups and interviews to sequentially “set” the initial direction of the research, “collect” data on participant experiences with ICU care and “reflect” on the analyses to derive working theory and recommendations. a Includes one participant from Fort McMurray. b Includes one participant from Lethbridge.
Fig 2
Fig 2. Patient and family comfort and trust in the ICU.
Patient and family member interactions with the care team determine comfort and trust in the ICU.
See this image and copyright information in PMC

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