title: Patient and Family Member-Led Research in the Intensive Care Unit: A Novel Approach to Patient-Centered Research.
abstract: BACKGROUND
  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.
authors: PaCER (Patient and Community Engagement Research) Program, University of Calgary, Calgary, Canada.
authors: Marlyn
authors: M
authors: Gill
authors: Alberta Health Services, Alberta, Canada.|Division of Critical Care Medicine, University of Alberta, Edmonton, Canada.
authors: Sean M
authors: SM
authors: Bagshaw
authors: Department of Community Health Sciences, University of Calgary, Calgary, Canada.
authors: Emily
authors: E
authors: McKenzie
authors: PaCER (Patient and Community Engagement Research) Program, University of Calgary, Calgary, Canada.|Alberta Health Services, Alberta, Canada.
authors: Peter
authors: P
authors: Oxland
authors: PaCER (Patient and Community Engagement Research) Program, University of Calgary, Calgary, Canada.
authors: Donna
authors: D
authors: Oswell
authors: PaCER (Patient and Community Engagement Research) Program, University of Calgary, Calgary, Canada.
authors: Debbie
authors: D
authors: Boulton
authors: Alberta Health Services, Alberta, Canada.|Department of Community Health Sciences, University of Calgary, Calgary, Canada.|Department of Critical Care Medicine, University of Calgary, Calgary, Canada.
authors: Daniel J
authors: DJ
authors: Niven
authors: Alberta Health Services, Alberta, Canada.|Department of Community Health Sciences, University of Calgary, Calgary, Canada.
authors: Melissa L
authors: ML
authors: Potestio
authors: Department of Community Health Sciences, University of Calgary, Calgary, Canada.
authors: Svetlana
authors: S
authors: Shklarov
authors: Department of Community Health Sciences, University of Calgary, Calgary, Canada.
authors: Nancy
authors: N
authors: Marlett
authors: Alberta Health Services, Alberta, Canada.|Department of Community Health Sciences, University of Calgary, Calgary, Canada.|Department of Critical Care Medicine, University of Calgary, Calgary, Canada.
authors: Henry T
authors: HT
authors: Stelfox
mesh_terms: D000368:Aged; D035843:Biomedical Research; D003422:Critical Care; D016638:Critical Illness; D003657:Decision Making; D005190:Family / Q000523:psychology*; D005260:Female; D006801:Humans; D007362:Intensive Care Units; D008297:Male; D008875:Middle Aged; D018802:Patient-Centered Care; D011368:Professional-Family Relations; D036301:Qualitative Research