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DHA’s TBI-focused Caregiver & Family Member Study continues at TBICoE

Image of A husband, wife, and two children sitting at the Warrior and Family Support Center. Genette Burges spends time with her husband Dan and children at the Warrior and Family Support Center at Joint Base San Antonio (Photo by: Lori Newman, Brooke Army Medical Center).

For the family members of some service members or veterans with traumatic brain injuries (TBI), caregiving is a 24/7 job. Those who live this daily life of caring for others are celebrated today with National Caregivers Day.

This may include assistance with daily activities, social interaction, and financial management. Without proper resources, these essential responsibilities can take a physical and psychological toll on the caregiver and the rest of their family.

In 2010, the Defense and Veterans Brain Injury Center, now known as the Traumatic Brain Injury Center of Excellence, launched the Caregiver and Family Member Study. This 15-Year Longitudinal TBI Study, led by TBICoE researchers at the National Intrepid Center of Excellence in Bethesda, Maryland is a congressionally mandated study that examines the effects of TBI incurred by service members. The specific focus of the study is on those who served in Operation Iraqi Freedom or Operation Enduring Freedom, and how those effects impact family members.

The Caregiver and Family Member Study aims to better understand the impact of the service member’s or veteran’s TBI on their family.

Now in its eleventh year, the Caregiver and Family Member Study has found that the time commitment and burden of caregiving is correlated with physical and psychological distress, poor sleep and disrupted family life. Frequently, caregivers balance their commitments toward their service member or veteran with childcare and other work duties, often receiving no help and having little time for themselves.

Caregivers also have unmet health care and care provision needs. These unmet needs can evolve to worse caregiver health and well-being.

However, the study also highlights that not all caregivers report negative outcomes. In fact, some report high levels of satisfaction and resilience and healthy family relationships.

Respite care, support groups, financial support, access to health care and training programs are critical for caregivers to manage the burdens of caregiving and to promote the recovery of the service member or veteran. Eligible caregivers can receive these services through the U.S. Department of Veteran Affairs Caregiver Programs.

Since launching the study, TBICoE has spearheaded several efforts to educate and support TBI caregivers, such as the development of the TBI Caregiver Quality of Life (TBI-CareQOL) Measurement System. TBICoE researchers at the NICoE plan to use measures from the TBI-CareQOL and larger Caregiver and Family Member Study as a screening tool to identify family members of NICoE patients at risk of poor health-related quality of life and in need of behavioral health care.

In addition, TBICoE’s “A Head for the Future” initiative has recorded testimonies emphasizing the need for robust TBI caregiver education and resources.

Brian O’Rourke, a retired Navy chief petty officer who sustained multiple TBIs, said, “My number one caretaker for the rest of my life is my wife, so for her to understand that I have TBI and how to help me deal with it is huge.”

TBICoE and NICoE staff anticipate that one of the overall impacts of the study is that caregivers are supported in their roles long term and their own health and welfare needs are attended to.

The TBICoE Caregiver and Family Member Study is ongoing and currently recruiting caregivers of service members and veterans with TBI and PTSD (TBI and PTSD caregivers), and parents and spouses who are not caregiving (non-caregiver military family members). Those interested in participating should contact the study leads at dha.caregiver.study@mail.mil or by phone at 855-821-1469.

To find additional resources for TBI caregivers and family members, visit the TBICoE website.

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TBICoE is the Defense Department’s office of responsibility for tracking traumatic brain injury data in the U.S. military. Here you’ll find data on the number of active-duty service members—anywhere U.S. forces are located—with a first-time TBI diagnosis in the first quarter of calendar year 2021. The data is also broken down by each branch of the armed services.

PRA Case Study Workbook

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This workbook, paired with corresponding PRA Training Video 8, is an interactive clinical case scenario to test your understanding in applying the Progressive Return to Activity. We hope this will help medical providers become more familiar with the PRA process when treating service members with concussion.

PRA Training Video 6: The Return to Duty Screening

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PRA Training Video 6: The Return to Duty Screening

In this lesson, we cover how to perform the Return to Duty, or RTD screening, which now includes both vestibular/physical and neurocognitive examinations. The purpose of the RTD screening is to objectively measure whether a service member is ready for return to full duty. Each video in the Progressive Return to Activity training series is designed to support primary care providers' ability to manage concussion/traumatic brain injury (TBI).

PRA Training Video 8: Clinical Case Scenario

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This is an interactive clinical case scenario to test your understanding in applying the Progressive Return to Activity (PRA). We hope this will help medical providers become more familiar with the PRA process when treating service members with concussion. Each video in the PRA training series is designed to support primary care providers' ability to manage concussion/traumatic brain injury (TBI).

PRA Training Video 3: Understanding Relative Rest

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In this lesson we explain the differences between complete rest and relative rest in a staged concussion recovery process, and provide examples of activities that promote relative rest. The revised Progressive Return to Activity (PRA) Clinical Recommendation uses the term 'relative rest' to emphasize the importance of early introduction of physical and cognitive activities that do not provoke symptoms following TBI. Each video in the PRA training series is designed to support primary care providers' ability to manage concussion/traumatic brain injury (TBI).

PRA Training Video 7: Symptom-Guided Management and Specialty Referral Guidance Tables

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This lesson covers how to use the Progressive Return to Activity, or PRA's Symptom-Guided Management and Specialty Referral Guidance tables. This lesson also details primary care management strategies for service members who are not progressing as expected in the PRA. Each video in the Progressive Return to Activity training series is designed to support primary care providers' ability to manage concussion/traumatic brain injury (TBI).

PRA Training Video 1: PRA Overview

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In the first of TBICoE's Progressive Return to Activity (PRA) video training series, you will learn about the reasons for using a progressive return to activity process and receive an overview of the 2021 PRA algorithm and its associated tools. By the end of lesson one, providers will better understand the PRA process, and explain that process to service members diagnosed with concussion. Each video in the PRA training series is designed to support primary care providers' ability to manage concussion/traumatic brain injury (TBI).

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In this lesson we review the six major changes in the TBICoE's revised 2021 Progressive Return to Activity (PRA) Clinical Recommendation that differ from the original recommendation. The changes reflect the latest TBI research, and will make it easier for providers to manage the recovery process and return service members with concussion to full duty as quickly and safely as possible. Each video in the PRA training series is designed to support primary care providers' ability to manage concussion/traumatic brain injury (TBI).

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In this lesson, we cover the key activity objectives for each of the six stages of the Progressive Return to Activity (PRA) Clinical Recommendation and provide activity examples for each stage. Each stage is designed to gradually increase the intensity and duration of a service member's physical and cognitive activity as they advance in the PRA process. Each video in the PRA training series is designed to support primary care providers' ability to manage concussion/traumatic brain injury (TBI).

PRA Training Video 4: PRA Progression Criteria

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In this lesson, we review the criteria for advancing through the stages of the Progressive Return to Activity (PRA) Clinical Recommendation. Each video in the PRA training series is designed to support primary care providers' ability to manage concussion/traumatic brain injury (TBI).

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2020 Traumatic Brian Injury Center of Excellence (TBICoE) Annual Report.

Traumatic Brain Injury: A Guide for Caregivers of Service Members and Veterans

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The 2021 "Traumatic Brain Injury: A Guide for Caregivers of Service Members and Veterans" is a recovery support tool to assist caregivers of service members and veterans who have sustained a traumatic brain injury at any severity level.

TBI Caregiver Support Forms

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Last Updated: December 28, 2022
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