VIEW SELECTED LIBRARY MEDIA
Name of Media:
Patient and Family Member-Led Research in the Intensive Care Unit: A Novel Approach to Patient-Centered Research
Marlyn Gill, Sean M. Bagshaw, Emily McKenzie, Peter Oxland1,2, Donna Oswell, Debbie Boulton, Daniel J. Niven, Melissa L. Potestio, Svetlana Shklarov, Nancy Marlett, Henry T. Stelfox, Critical Care Strategic Clinical Network
Publisher or Source:
Type of Media:
Media Originally for:
Critical Care Physicians, General Medical Professionals, Nurses and/or Other Critical Care Medical Professionals
Country of Origin:
Primary Focus of Media:
Pre-Use of PICS Designation
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.
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.
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.
Patient and family member-led research is feasible and can identify opportunities for improving care.
To view the attached Video media file, Click Icon:
PostICU, Inc's library staff reviewed this copyrighted material contained in the library and reasonably believes that its inclusion in our library complies with the "Fair Use Doctrine" because: (1) our library's is for nonprofit and educational purposes; (2) the nature of the copyrighted work is related to our mission; (3) the amount and substantiality of the portion used in relation to the copyrighted work as a whole is fair and reasonable; and (4) the potential market for or value of the copyrighted work will if impacted, should be enhanced, by its presence in our library.