Traumatic brain injury education for adult patients and families: a scoping review

Abstract

Traumatic brain injury (TBI) is increasingly viewed as a chronic condition, bringing long-term needs for patient and caregiver knowledge pertaining to symptom and problem management over time. In light of these needs, we performed a scoping review of the literature on brain injury education provided to adult patients and/ or family members affected by TBI. Objectives were to describe the types of educational interventions that have been developed; to review the effects of these interventions; and to determine gaps that might be filled by future research efforts. Of 88 articles meeting search criteria and subjected to data extraction, 34 concerned education about mild TBI and 54, moderate to severe TBI. Most mild TBI articles focused on education in the Emergency Room, while most moderate/ severe TBI education was directed toward family members/ caregivers and was frequently combined with other treatment components, making the effects of education difficult to discern. Only 1 article incorporated elements of self-management training (SMT), a model proved effective in other chronic health conditions. We recommend further exploration of SMT principles in long-term TBI care, as well as more precise definition of treatment components in all patient and family interventions, so that the specific effects of education and other treatment elements may be more readily evaluated.

Supporting self‐management after traumatic brain injury: Codesign and evaluation of a new intervention across a trauma pathway

“…The focus is often on physical activity 18 or the delivery of education about brain injury. 19 Widening access to SSM beyond "all or nothing" delivery is a challenge that remains unaddressed, especially when considering complexities such as cognitive impairment.…”

“…Unlike many other long‐term conditions, self‐management as a framework for support is rarely considered for people after TBI. The focus is often on physical activity or the delivery of education about brain injury . Widening access to SSM beyond “all or nothing” delivery is a challenge that remains unaddressed, especially when considering complexities such as cognitive impairment.…”

Development of the life change adaptation scale for family caregivers of individuals with acquired brain injury

“…Thus, the life course and roles of the family caregiver differ between stroke and ABI. Furthermore, family caregivers of adult ABI patients are more likely than those of pediatric ABI patients to have their adaptational outcomes affected [ 23 , 24 ]. Pediatric ABI patients complete their early childhood development with their disability [ 25 , 26 ].…”

“Just tell me in a simple way”: A qualitative study on opportunities to improve the transition from acute hospital care to home from the perspectives of patients with traumatic brain injury, families, and providers

“…There has been a variety of literature published on educating patients with traumatic brain injury and their families. 23 Most traumatic brain injury education is directed at family members 23 and is commonly delivered by nurses 24 and other allied health care providers. However, although research shows family members recognize the need for additional education, some may not know areas in which education is needed.…”