Burn Survivors on New Tool to Track Social Recovery.
In a new video from a School of Public Health research team, burn survivors speak candidly about the impact of burn injuries on going back to their jobs, re-connecting with family and friends, and re-establishing romantic relationships.
“Burn survivors returning home from the hospital are not only faced with a massive physical recovery, but severe burn injuries affect many important aspects of social reintegration,” says survivor Sadie Wilcox in the video, which illustrates the importance of the Life Impact Burn Recovery Evaluation (LIBRE) Profile, a new tool to measure social participation in burn survivors.
The LIBRE Profile appraises participation in personal relationships, work interactions, and social activities. “Using innovative measurement methods, a computer algorithm selects a handful of questions from a comprehensive list,” says lead investigator Lewis Kazis, professor of health law, policy & management. It calculates a precise score without creating an undue burden for participants.”
Kazis expects clinicians and researchers will use the questionnaire to assess survivors’ needs. “We are also working with the Phoenix Society to share the LIBRE Profile online,” he says. “We hope it will facilitate conversations between burn survivors and family members or healthcare providers and connections to relevant resources, such as peer support groups.”
The tool was developed through a collaboration among SPH; the Phoenix Society for Burn Survivors, an advocacy group; and the Boston-Harvard Burn Injury Model System (BH BIMS), a program at Spaulding Rehabilitation Hospital and Massachusetts General Hospital.
“The burn survivor community, along with burn injury health professionals, played a central role throughout the LIBRE Profile development,” says Mary Slavin, the team’s dissemination expert and a research assistant professor of health law, policy & management.
The collaboration began by defining the project’s goals and continued through the process of generating questions. “Burn survivors in the project were treated with respect as experts on their experience,” says David Vogel, a survivor featured in the video. “The process was empowering for all involved.”
The LIBRE Profile will launch in fall 2018. Meanwhile, a new study led by colleagues at BH BIMS will use the LIBRE Profile to map social recovery over time.
For updates, visit the team’s website or connect on Facebook or Twitter. The LIBRE Profile is funded by the National Institute on Disability and Rehabilitation Research.