Wednesday, March 22, 2023
3/22/2023
The Spaulding-Harvard Traumatic Brain Injury Model System (SH-TBIMS) will engage a diverse panel of TBI stakeholders, including persons with TBI and caregivers, to establish a more person-centered approach to conceptualizing and evaluating long-term outcome in persons with severe disability after TBI and their caregivers. The goal of this project is to give voice to persons with “lived experience” in TBI in defining how outcome is conceptualized and measured. The objectives are to, 1) promote a shared understanding of the notion of “acceptable” outcome between consumers and professionals, 2) develop a brief telephone-based caregiver interview to detect changes in function that occur across the lifespan in persons with sTBI, 3) establish a standardized measure of “clinically-meaningful” change over time and 4) promote public awareness of existing obstacles to accessing care after sTBI and strategies to overcome them. Anticipated outcomes include, 1) improved understanding of provider and consumer perspectives of “acceptable” outcome after sTBI, 2) expanded capacity to conduct long-term outcome assessment among persons with sTBI, 3) increased understanding of the resources required to address the needs of TBI caregivers and 4) greater awareness of existing roadblocks to accessing health services experienced by persons with sTBI. The expected products are, 1) a Conversation Guidebook About Outcome After Severe TBI to promote shared decision-making about goals of care between providers and caregivers of persons with sTBI, 2) brief telephone-administered caregiver questionnaires to gain new knowledge of the chronic phase of recovery after sTBI and improve understanding of factors that impact caregiver effectiveness and 3) user-friendly multimedia consumer and professional educational materials developed in partnership with TBI stakeholders.
HHS’ Tracking Accountability in Government Grants System (TAGGS) website provides access to detailed descriptions of grants, loans, aggregated direct payments and other types of financial assistance awarded by the HHS Operating Divisions (OPDIVs) and the Office of the Secretary Staff Divisions (STAFFDIVs).
