(Updated) LIBRE - Life Impact Burn Recovery Evaluation
Boston University School of Public Health
Measurement of Community Participation Using a Computer Adaptive Test (CAT) in Adult Patients with Burns
Submitted by Mary Slavin and Flor Amaya, and Cayla Saret
The Disability and Rehabilitation Research Project (DRRP), titled Measurement of Community Participation Using a Computer Adaptive Test (CAT) in Adult Patients With Burns, followed an integrated knowledge translation (KT) approach. KT efforts began by partnering with target audiences at the beginning of the project to formulate ideas and leverage existing resources. Based on input from burn survivors, initial KT efforts focused on increasing awareness of the impact of burn injuries on social participation (e.g., an online video about interacting with burn survivors used the hashtag #JustSmile). Key informants shared stories about their experiences with burn injuries and social participation. Subsequent project efforts focused on branding the Life Impact Burn Injury Recovery Evaluation (LIBRE) Profile, a new assessment developed under the DRRP (e.g., logos and taglines). The LIBRE Profile is used to assess social participation and identify areas in which burn survivors may need support, thereby improving rehabilitation efforts. Upon completion of the project, the LIBRE Profile will be available to burn survivors, clinicians, and researchers to track social participation, and we aimed to build awareness of the LIBRE Profile among those three target audiences.
Adults who experience burn injuries face considerable physical, psychological, and social challenges throughout their recovery and as they return to daily life. Current rehabilitation efforts for persons with burn injuries primarily emphasize increased physical function. However, literature on long-term rehabilitation after burns suggests that quality of life for post-injury individuals is largely driven by their ability to return to desired social roles. The LIBRE Profile will assess the social participation of burn survivors so that interventions can be implemented and resources directed to improving social participation as part of the rehabilitation process.
LIBRE Profile staff have actively engaged with stakeholders and target audiences from the onset of our assessment development effort, and input from burn survivors, their family members, and clinicians has been critical to advancing research and KT over the course of the project. The project team consists of stakeholders with different areas of expertise. For example, the team includes measurement development and psychometric experts, clinicians (e.g., medical doctors, physical therapists) and key opinion leaders within the burn-injury community who are involved with the American Burn Association. KT efforts are informed and guided by direct involvement of burn-injury victims and the Phoenix Society—the major national group for burn survivors. The Executive Director of the Phoenix Society, who is also a burn survivor, is part of the LIBRE Profile team. In addition, the LIBRE Profile team partnered with a local peer support group, the Burn Survivors of New England (BSONE), members of which have consulted throughout the project. BSONE members helped guide the project’s theoretical framework, suggested the concept for the #JustSmile public service announcement, participated in focus groups to develop the assessment, reviewed materials such as flyers for content and language, and tested the LIBRE Profile.
To produce a well-conceptualized, user-friendly marketing plan for the LIBRE Profile, staff leveraged the tremendous resources available at Boston University, a large research and higher learning institution. AdLab, a student-faculty operated marketing and communications firm, has been involved with the LIBRE Profile project from its inception. Staff at the School of Public Health and AdLab, in collaboration with the study team, developed LIBRE Profile branding (logo and infographics) that conveys a consistent message for and is incorporated into all Profile-related dissemination and KT efforts. AdLab also created an online space for participants involved in focus groups and interviews to stay engaged as members of the advisory group, remain up-to-date on project activities, and access links to supports and other resources. In addition, AdLab produced a video for clinicians and researchers about the LIBRE Profile. The group is working to develop a second video, filmed at the 2017 Phoenix World Burn Congress, to discuss the LIBRE Profile and the social impact of burn injuries from the survivor’s perspective.
The LIBRE Profile team also has worked with Boston University’s Software Application and Innovation Laboratory to develop an accessible, user-friendly web-based platform for the LIBRE Profile assessment.
The project’s clinical advisory group, comprised of leaders from prominent national burn injury centers, meets regularly with the LIBRE Profile team to guide its research and KT efforts.
The LIBRE Profile project has quickly and successfully engaged multiple stakeholders and potential end-users of LIBRE in the development process. By working with BSONE and the American Burn Association to conduct focus groups of burn survivors and clinicians, the project has promoted awareness and anticipation of LIBRE’s release among both groups. The project, moreover, has fostered a relationship with The Phoenix Society, a burn survivor peer support network, which also has been involved in the early phases of assessment development. The reliability and validity of the LIBRE Profile was established in a pilot study of about 600 burn survivors (submitted for publication). The LIBRE Project is now working to develop a process for researchers, clinicians, and burn survivors to test the LIBRE Profile. These early users will provide feedback on the tool and its associated training materials. Once the tool and training materials are complete, the Phoenix Society plans to disseminate them to burn survivors across the United States
The early and ongoing engagement of stakeholders provided a greater understanding of the target audience and assisted in guiding the development of LIBRE. The AdLab team has incorporated the values and needs of burn survivors in its creation of a professional brand package that will help to increase recognition among burn survivors and encourage the use of LIBRE during recovery. At the 2017 Phoenix World Burn Congress, the project team gathered key input on LIBRE’s updated version from burn survivors, clinicians, and researchers to leverage critical feedback on assessment components ranging from demographic data to the interpretation of score reports.
Boston University, School of Public Health
Department of Health Policy & Management
715 Albany Street, W263
Boston, MA 02118
LIBRE - http://sites.bu.edu/libre/
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