New Guide for Caregivers of Service Members and Veterans

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.

Throughout the development process, the Defense Health Board received five briefings. Its members were kept fully in­formed of the structure and content of The Guide. Defense Health Board members provided invaluable guidance and sup­port to the creation of this tool.

Contents and Key Messages

TBI: A Guide for Caregivers of Service Members and Veterans consists of a Welcome section and four modules.

Welcome Section: The welcome contains an introduction and overview of the guide, as well as suggestions for use of the modules and the Caregiver’s Companion. The welcome also contains a detailed index of subjects and topics addressed.

Module 1: Introduction to TBI provides general informa­tion on the structure and function of the brain and how a TBI can affect its function. This module provides definitions to de­mystify medical terminology, provides helpful diagrams of the brain, discusses the causes and types of TBI, possible complica­tions and the recovery process. This module provides guidance to the family on what they can do to help in the acute treat­ment phase.

Module 2: Understanding the Effects of TBI and What You Can Do to Help consists of more detailed information about the possible physical, cognitive, communication, behavioral and emotional effects that may result from a TBI. This module presents many possible effects but emphasizes the uniqueness of each TBI; each manifests differently with a unique recov­ery process. The interconnectedness of symptoms is discussed, what the caregiver may see and what the caregiver can do to help. The module provides strategies for helping the service member/veteran to manage his/her challenges and eventual re­turn to duty or life in the community. The module provides a map of Military Treatment Facilities, an introduction to the VA Polytrauma System of Care, introduces the members of the treatment and rehabilitation teams and emphasizes the impor­tance of the caregiver as a member of these teams.

Module 3: Becoming a Family Caregiver for a Service Mem­ber/Veteran with TBI, focuses on social support and self-care. Real caregivers offer the strategies they employed to find the time to meet their needs for recreation and time to care for their own health problems. Finding meaning in care-giving, taking pride in their ability to care and the growth and change they see in themselves is a theme of this module. Journaling is encouraged as a guidepost to these changes. The suggestions on advocacy for the injured service member/veteran at the bedside, with members of the health care team, with employers and at a policy level were well received by caregivers in the focus groups. Helping children cope when a parent sustains a TBI discusses that the child may feel she/he has lost both parents — one to the TBI and the other to care-giving. Age appropriate guidance on discussing TBI with children is included. This module also stresses building on family strengths and offers suggestions for building stronger family ties.

Module 4: Navigating Services and Benefits intends to ease the process of obtaining support for the caregiver by provid­ing information on many of the services and benefits available to the service member/veteran and his/her family members. The TBI Continuum of Care is described. Service- and VA-specific information on support services for wounded service members/ veterans and their families is provided. The module offers a self-assessment tool to aid the caregiver to determine the amount of stress that a particular issue is causing on a scale of 1-5. Topics and resources covered in this module include: health benefits, counseling and behavioral health, employ­ment, education, housing, financial issues, legal services, trav­el, disability evaluation system, transition assistance and state level benefits.

Multimedia Component: The Center of Excellence for Medical Multimedia has agreed to house the guide on its award-winning TBI patient education Web site, Project Jour­ney Home. The guide is posted in PDF form on the Web site and can be downloaded for printing. The video portion por­trays three families each with a service member who has sus­tained a moderate or severe TBI. A skilled facilitator walks the families through the contents of the guide and portrays the questions, anxieties and triumphs experiences by caregivers.

The Caregiver’s Companion is designed as a portable tool for caregivers to keep with them. It includes a glossary of medical and military terms and a list of military ranks and insignia to help caregivers navigate the new world of military medicine to which they may be unfamiliar. Forms to maintain the names and contact information of all the members of the treatment and rehabilitation team are provided as well as medication logs. A volunteer form with specific tasks such a shopping, meals, etc. will make it easier for extended family and friends to pro­vide tangible assistance. The Caregiver’s Companion provides a place to store business cards and imaging CDs.

About the author

Margaret Campbell-Kotler is the former manager of the Office of Education for the Defense and Veterans Brain Injury Center (DVBIC), the primary TBI operational component of DCoE. In this capacity, she managed the de­velopment of the Congressionally mandated TBI Family Caregiver Cur­riculum. In addition, Campbell-Kotler had programmatic responsibility for 13 DVBIC regional education coordinators located at military teach­ing facilities, VA Polytrauma Centers and two civilian locations across the country. She was responsible for the development and distribution of edu­cational materials on TBI for families, service members and health care providers. Under her leadership, this office distributed over 150,000 TBI educational products in 2009. The DVBIC Annual TBI Military Training Conference attended by over 800 military and veterans’ health care provid­ers is organized under her leadership. Prior to joining DVBIC in March 2008, Campbell-Kotler was a member of the senior leadership team of Ag­ing and Disability Services of Montgomery County, Md. and the Execu­tive Director of its Commission on Aging. Campbell-Kotler holds a BSN cum laude, from Niagara University, and an MPH from the University of North Carolina at Chapel Hill.

References

1. Rotondi, et al. “A Qualitative Needs Assessment of Persons Who Have Experienced Traumatic Brain Injury and Their Primary Family Caregivers” Journal of Head Trauma Rehabilitation (22), No.1 pp 14-25.