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
The Measurement of Community Participation Using a Computer Adaptive Test (CAT) in Adult Patients with Burns project implemented an integrated KT approach by partnering with end-users at the beginning of their project and leveraged existing resources to brand the tool, LIBRE. Once completed, the tool can be used by burn survivors and clinicians to track an individual’s burn recovery, improve rehabilitation efforts and identify areas where additional support is needed.
Adults who experience burn injuries face considerable physical, psychological, and social challenges throughout their recovery and return to everyday life. Current rehabilitation strategies are mainly targeted to increase the strength and mobility of individuals with burn injury. However the literature on long-term rehabilitation after burns suggests that quality of life for individuals with burns is mainly driven by their ability to return to a productive role in their social circles. The CAT developed by this project aims to identify the social needs of burn survivors so that future interventions and strategies can be implemented to address the process of rehabilitation in this population.
Staff have actively engaged and partnered with stakeholders and end-users from the onset of the design process to develop the CAT. Burn survivors, their family members, and clinicians have suggested input to guide the direction of development. The study team consists of stakeholders including specialists in psychometric assessments, clinical experts and a clinically trained burn survivor who is the executive director of the burn survivor peer support network, the Phoenix Society. In addition, staff partnered with the Burn Survivors of New England peer group to conduct focus groups with their members to solicit feedback to guide the theoretical framework of CAT.
To produce a user-friendly and well-conceptualized structure for the CAT, staff leveraged an existing resource at Boston University, AdLab, a student-faculty run marketing communications firm. Staff at the School of Public Health and AdLAb along with the study team developed a marketing brand name for CAT of LIBRE – Life Impact Burn Recovery Evaluation. The brand encompasses website with an image that conveys a consistent message for future dissemination efforts. Burn survivors and clinicians will be able to go to the website and complete an evaluation in order to track the burn recovery of an individual.
AdLab also created an online space for participants involved in focus groups and interviews to offer comments that help guide the development of the project. The site helps users stay engaged as members of the advisory group, stay up to date on project activities, and access links to supports and other resources.
LIBRE is still under development, so measurement of the effectiveness of the tool is planned. However, the project has already been successful in engaging multiple stakeholders and potential end-users of LIBRE in the development process. By working with the Burn Survivors of New England and the American Burn Association to conduct focus groups of burn survivors and clinicians, both groups are now aware of and anticipating the release of LIBRE. The project has also fostered a relationship with The Phoenix Society, a burn survivor peer support network, which has also been involved in the early phases of tool development. Once the tool is complete, the Phoenix Society plans to disseminate the tool to burn survivors across the United States.
The early engagement of stakeholders provided a greater understanding of the target audience and assisted in guiding the development of LIBRE. The AdLab team is incorporating the values and needs of burn survivors in their creation of a professional brand package. This may increase recognition of burn survivors and encourage use of LIBRE during their recovery.
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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