Education on the consequences of traumatic brain injury for children and adolescents with TBI and families/caregivers: a systematic scoping review.

OBJECTIVE(S): To examine the breadth of education or training on the consequences of traumatic brain injury (TBI) for children and adolescents with TBI and their families/caregivers. METHODS: Systematic scoping review of literature published through July 2018 using eight databases and education, training, instruction, and pediatric search terms. Only studies including pediatric participants (age <18) with TBI or their families/caregivers were included. Six independent reviewers worked in pairs to review abstracts and full-text articles independently, and abstracted data using a REDCap database. RESULTS: Forty-two unique studies were included in the review. Based on TBI injury severity, 24 studies included persons with mild TBI (mTBI) and 18 studies focused on moderate/severe TBI. Six studies targeted the education or training provided to children or adolescents with TBI. TBI education was provided primarily in the emergency department or outpatient/community setting. Most studies described TBI education as the main topic of the study or intervention. Educational topics varied, such as managing TBI-related symptoms and behaviors, when to seek care, family issues, and returning to work, school, or play. CONCLUSIONS: The results of this scoping review may guide future research and intervention development to promote the recovery of children and adolescents with TBI.

Experiences of caregivers and individuals living with traumatic brain injury in accessing health information: a qualitative investigation.

BACKGROUND/PURPOSE: Rehabilitation and treatment of chronic symptoms of traumatic brain injury (TBI) present life-long challenges. This qualitative study aimed to understand the experience of individuals with TBI and caregivers in finding and using health information and to understand their interest in participating in research. METHODS: Participants were recruited through hospital listservs, websites, social media, and word of mouth from across the US. A qualitative constructivism research method was used to analyze responses from semi-structured interviews with 24 individuals, 11 with TBI and 13 caregivers. RESULTS: Three major themes emerged from the analyses: 1) processes and resources for finding TBI-related health information, 2) reliability of information, and 3) participation in research. Study participants described using the internet, consulting with healthcare professionals, reading research articles, and seeking out information from other individuals with TBI or caregivers to search for information. Participants also shared their experiences related to evaluating the reliability of information and the impact of individuals with TBI and caregivers participating on research teams. CONCLUSION: Participants identified various needs in finding relevant health information and highlighted gaps in searching for and using health information. Participants identified an overarching need for improved dissemination of information that is both accessible and reliable.

Examination of Health Information Needs of Caregivers of and Individuals with Burn Injuries.

Burns are a leading cause of trauma worldwide with about 450,000 burn injuries being treated at medical facilities in the United States each year. Finding relevant information on the long-term consequences of burn injuries is a significant challenge for many individuals with burn injuries and their caregivers. This qualitative study aimed to identify how individuals with burn injuries and caregivers of individuals with burn injuries prefer to access and use health information, identify obstacles to accessing useful information, and identify information most needed by burn survivors and caregivers. Participants were recruited through hospital listservs, websites, social media, and word of mouth from across the United States. Semi-structured interviews were conducted with 23 individuals, 12 with burn injuries and 11 caregivers of individuals with burn injuries. Three specific needs were identified: (1) more direction from health professionals in finding health information relevant to burn injuries; (2) more internet-based access points that connect individuals to appropriate support networks; and (3) more support for long-term consequences of burn injuries, specifically with psychological, social, and other chronic physical issues. Participants identified various needs in finding relevant health information, thereby highlighting gaps in current literature and the dissemination of current literature. One potential way to address these deficiencies is to consider user-centered design principles in developing research, by more directly involving individuals with burn injuries and caregivers as part of the research team.

Scoping review of peer reviewed publications addressing rehabilitation for people sustaining traumatic spinal cord injury.

Study Design: Scoping review Objective: To study the design, clinical setting and outcome measures used in spinal cord injury rehabilitation publications. Methods: A literature search on PubMed and Medline was conducted focusing on articles published between 1990-2016 and using "traumatic SCI", "functional outcomes", "rehabilitation", "work" and "return to work" as outcomes. Studies were categorized based on design (intervention, including RCTs vs. non-intervention studies), settings (inpatient vs. outpatient vs. transition), and outcome measures used (impairment vs. function vs. participation/integration vs. quality of life vs. symptoms). Work-related studies were categorized independently. Results: Five hundred forty-four articles met the inclusion criteria. Of these, 234 were interventional studies, including 23 RCTs. Studies were evenly divided among inpatient, outpatient and transition settings. Of the 234 interventional studies, 143 used functional evaluations. Sixty-one different functional instruments were used, with a predominant use of the Functional Independence Measure (61 times) and an additional use of SCI-specific measures, i.e. Spinal Cord Independence Measure and Craig Handicap Assessment and Reporting Technique (13 times each). Fifty-one studies measured mobility, while only three measured hand functions. The work-related sub-analysis revealed 32 intervention studies (no RCTs), of which 15 used functional evaluations and only three focused on tetraplegia. Conclusion: Our study revealed a paucity of intervention trials and RCTs, indicating a dearth of knowledge that would be needed to establish evidence-based practice guidelines. This is particularly true for tetraplegia. While standard measures of function were frequently used, providing valuable data, there is no consensus about what exact outcome measure to use. Using newer measurement techniques, for instance based on the application of item response theory, should be considered to enhance uniformity.