Amy H Jones1, Zoelle B Dizon2, Tessie W October3. 1. Department of Critical Care, Children's National Health System, Washington, DC. Electronic address: ajones3@childrensnational.org. 2. Department of Critical Care, Children's National Health System, Washington, DC. 3. Department of Critical Care, Children's National Health System, Washington, DC; Department of Pediatrics, George Washington University School of Medicine and Health Sciences, Washington, DC.
Abstract
BACKGROUND: Brain death is a difficult concept for the public to comprehend, resulting in a reliance on alternative resources for clarity. This study aims to understand the public's perception of brain death via analysis of information on the Internet, determine the accuracy of that information, and understand how its perception affects the physician-patient relationship. METHODS: We conducted a prospective cross-sectional study to evaluate information available to the public about brain death. The top 10 Google websites were analyzed for language complexity and accuracy in describing brain death. The top 10 YouTube videos were examined for content and the comments qualitatively analyzed for themes. RESULTS: Inaccuracies describing brain death inconsistent with national guidelines were prevalent amongst 4 of 10 Google websites, 6 of 10 YouTube videos, and 80% of YouTube comments. On average, Google websites were written at a 12th grade level and 90% mentioned organ donation. Videos were frequently emotional (78%); 33% included negative comments toward physicians, of which 50% mentioned organ donation. All videos included clarification comments questioning the differences between brain death, death, coma, and persistent vegetative states. CONCLUSIONS: The study revealed a significant amount of inaccurate information about brain death, affecting the public's understanding of the concept of brain death and resulting in negative emotions specifically toward physicians, and the link between brain death and organ donation. The medical community can improve understanding through consistent, simplified language, dissociating brain death from organ donation, and recognizing the emotions tied to discussions of brain death.
BACKGROUND:Brain death is a difficult concept for the public to comprehend, resulting in a reliance on alternative resources for clarity. This study aims to understand the public's perception of brain death via analysis of information on the Internet, determine the accuracy of that information, and understand how its perception affects the physician-patient relationship. METHODS: We conducted a prospective cross-sectional study to evaluate information available to the public about brain death. The top 10 Google websites were analyzed for language complexity and accuracy in describing brain death. The top 10 YouTube videos were examined for content and the comments qualitatively analyzed for themes. RESULTS: Inaccuracies describing brain death inconsistent with national guidelines were prevalent amongst 4 of 10 Google websites, 6 of 10 YouTube videos, and 80% of YouTube comments. On average, Google websites were written at a 12th grade level and 90% mentioned organ donation. Videos were frequently emotional (78%); 33% included negative comments toward physicians, of which 50% mentioned organ donation. All videos included clarification comments questioning the differences between brain death, death, coma, and persistent vegetative states. CONCLUSIONS: The study revealed a significant amount of inaccurate information about brain death, affecting the public's understanding of the concept of brain death and resulting in negative emotions specifically toward physicians, and the link between brain death and organ donation. The medical community can improve understanding through consistent, simplified language, dissociating brain death from organ donation, and recognizing the emotions tied to discussions of brain death.
Authors: Suzanne Dickerson; Amber M Reinhart; Thomas Hugh Feeley; Rakesh Bidani; Ellen Rich; Vinod K Garg; Charles O Hershey Journal: J Am Med Inform Assoc Date: 2004-08-06 Impact factor: 4.497