Abstract
Burns are a leading cause of trauma worldwide with about 450,000 burn injuries being treated at medical facilities in the United States each year. Finding relevant information on the long-term consequences of burn injuries is a significant challenge for many individuals with burn injuries and their caregivers. This qualitative study aimed to identify how individuals with burn injuries and caregivers of individuals with burn injuries prefer to access and use health information, identify obstacles to accessing useful information, and identify information most needed by burn survivors and caregivers. Participants were recruited through hospital listservs, websites, social media, and word of mouth from across the United States. Semi-structured interviews were conducted with 23 individuals, 12 with burn injuries and 11 caregivers of individuals with burn injuries. Three specific needs were identified: (1) more direction from health professionals in finding health information relevant to burn injuries; (2) more internet-based access points that connect individuals to appropriate support networks; and (3) more support for long-term consequences of burn injuries, specifically with psychological, social, and other chronic physical issues. Participants identified various needs in finding relevant health information, thereby highlighting gaps in current literature and the dissemination of current literature. One potential way to address these deficiencies is to consider user-centered design principles in developing research, by more directly involving individuals with burn injuries and caregivers as part of the research team.