Overview

Traumatic Brain Injury: A Guide for Caregivers of Service Mem­bers and Veterans is designed for families caring for a service member or veteran who sustained a moderate, severe or pen­etrating traumatic brain injury (TBI) during Operation Endur­ing Freedom (OEF) or Operation Iraqi Freedom (OIF). The guide has been available online at www.traumaticbraininjury­atoz.org since April 2010 following the receipt of approval for its distribution within the Departments of Defense and De­partment of Veterans Affairs (VA). Print copies of the guide be­gan to be distributed personally to family caregivers in August 2010.

The guide was mandated by Congress in the 2007 National Defense Authorization Act, which established the TBI Family Caregiver Panel to develop curricula for family caregivers that would provide techniques, strategies and skills to assist in car­ing for service members and veterans who sustained a TBI. The panel had 15 members: subject matter experts from each of the services, VA, the Department of Health and Human Ser­vices, civilian providers and family caregivers. As a federal ad­visory committee, the TBI Family Caregiver Panel functioned as a subcommittee of the Defense Health Board. The Defense and Veterans Brain Injury Center (DVBIC) provided program­matic and logistical support for the panel.

Since 2001, 29,558 service members have sustained a mod­erate, severe or penetrating TBI. A moderate TBI is character­ized by a blow or jolt to the head causing loss of consciousness for more than 30 minutes but less than 24 hours; alteration of consciousness lasting 24 hours or less; or post-traumatic amne­sia for greater than 24 hours but less than seven days. A severe TBI is characterized by a loss of consciousness of 24 hours or more; alteration of consciousness for more than 24 hours; and post-traumatic amnesia for seven days or more. A penetrating TBI is an open head injury in which the outer layer of the me­ninges is penetrated.

The course of recovery from a moderate, severe or penetrat­ing TBI may take weeks, months or years. During this time, family and others who provide support to the injured service member play an important role in the recovery process. Roton­di et al report that “When a caregiver experiences lower burden and anxiety and remains healthy, there is a positive effect on the care receiver’s well-being.”¹ A caregiver is defined in the guide as, “any family or support person(s) relied upon by the service member or veteran with TBI, who assumes primary respon­sibility for ensuring the needed level of care and overall well-being of that service member or veteran.” Family and caregivers include: spouses, parents, children and other extended family members, as well as significant others and friends.

The goals for TBI: A Guide for Caregivers of Service Members and Veterans are, foremost, to provide support to the caregiver, to offer education to family caregivers on TBI and guidance on symptom management and to facilitate communication be­tween caregivers and the members of the health care team.

The guide is comprised of a welcome section and four mod­ules packaged in a loose-leaf binder. A Caregiver’s Companion of organizational tools is housed in a separate binder. A sturdy backpack is provided for storage and to enable the caregiver to easily carry the guide while his/her hands can remain free to hold a child’s hand or to carry additional personal items.

The guide is written in a question and answer format at an eighth grade reading level. Pictures and quotes from fam­ily caregivers of service members and veterans who sustained a moderate, severe or penetrating TBI are found throughout. Journaling by the caregiver is encouraged and questions which prompt reflection are included at the end of each chapter.

Development Process

The TBI Family Caregiver Panel held its first official meeting June 17-18, 2008. The panel convened a town hall meeting on June 17 to obtain input from consumers and advocates on the kind of information that family caregivers of service members and veterans with a traumatic brain injury would find useful. The panel heard that families wanted the guide to recognize diversity and include models of families successfully managing their care-giving challenges; the importance of offering hope despite a slow process of recovery was emphasized. Families wanted information on the course of recovery after a TBI, and they wanted to know what to expect and when to advocate for more rehabilitative services. Families expressed the need for information and tools that would enable them to become true partners with the health care team. Families felt that journal­ing should be encouraged. Families and advocates were quite vocal in their desire for the guide to provide information that would assist families in understanding the military and veter­ans’ health care and benefits systems.

Over the course of the following 18 months, the panel met five times. Between the official meetings, panel members met in workgroups, each focused on a separate module of the guide. Once the content was agreed upon, panel members then moved on to work in functional groups such as editing and design, consumer feedback, marketing and dissemination and website.

Before the guide was finalized, the panel sought the review and input of family caregivers of service members and veterans who had sustained a TBI. Six professionally facilitated focus groups were conducted at DVBIC sites in Tampa, San Diego, Fort Bragg and Walter Reed Army Medical Center. One focus group was conducted by telephone. Almost all the focus group participants were spouses who had been a family caregiver from two months to 10 years. The response to the guide was overwhelmingly positive. The caregivers expressed the feeling that the guide highlighted the importance of their role while acknowledging the challenges they faced. Caregivers thought that the guide provided emotionally supportive content. Fo­cus group participants also reported that they would utilize the guide to discuss the TBI with the injured service member or veteran and use it as a basis for discussion with extended family members. The Panel had considered providing the modules to the caregiver at appropriate intervals in the recovery process. However, the family caregivers wanted The Guide to be given to the caregiver in its entirety at one time. It was heartening to learn that focus group participants with as much as ten years of care-giving experience felt they found something new in The Guide.