Caring for our wounded warriors: A qualitative examination of health-related quality of life in caregivers of individuals with military-related traumatic brain injury

Abstract

Objective To develop a conceptual framework that captures aspects of health-related quality of life (HRQOL) for caregivers of individuals with military-related traumatic brain injury (TBI). Design Qualitative data from nine focus groups composed of caregivers of wounded warriors with a medically documented TBI were analyzed. Setting Focus group participants were recruited through Walter Reed National Military Medical Center (WRNMMC), community outreach and support groups. Participants 45 caregivers of wounded warriors who had sustained a mild, moderate, severe, or penetrating TBI. Results Qualitative frequency analysis indicated that caregivers most frequently discussed social health (44% of comments), followed by emotional (40%) and physical health (12%). Areas of discussion that were specific to this population included: anger regarding barriers to health services (for caregivers and service members), emotional suppression (putting on a brave face for others, even when things are not going well), and hypervigilance (controlling one’s behavior/environment to prevent upsetting the service member). Conclusion Caring for wounded warriors with TBI is a complex experience that positively and negatively affects HRQOL. While some aspects of HRQOL can be evaluated with existing measures, evaluation of other important components does not exist. The development of military-specific measures would help facilitate better care for these individuals.

The Development of a New Computer Adaptive Test to Evaluate Feelings of Being Trapped in Caregivers of Individuals With Traumatic Brain Injury: TBI-CareQOL Feeling Trapped Item Bank

“…A detailed summary of the origination of the Feeling Trapped Item Pool can be found in Carlozzi et al 30 Briefly, in accordance with established measurement development standards, 44 an initial item pool of 75 items was generated from focus group discussion among caregivers of individuals with TBI (nine groups with caregivers of civilian-related TBI and nine groups with caregivers of SVMs with TBI) 26,27 and systematic literature reviews. Items were refined via an iterative process that included expert review, evaluation of item literacy level, and caregiver cognitive debriefing to ensure adequate content coverage and appropriate reading and comprehension levels.…”

“…The theme of feeling trapped emerged in recent focus groups conducted with caregivers of civilians with TBI, and with caregivers of service members/veterans (SMVs) with TBI. 26,27 As rehabilitation for individuals with TBI continues to evolve, many programs have recognized the need to treat not only the person with TBI, but also their care system. Although there is literature to support the reciprocal relationship of the well-being of the caregiver and of the person with TBI 28,29 there has been little done to develop ways of measuring symptoms or experiences unique to caregivers of persons with brain injury.…”

Understanding Health-Related Quality of Life of Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury: Establishing the Reliability and Validity of PROMIS Social Health Measures

“…16 Feelings of social isolation and loss of intimacy (especially for spousal caregivers) are common. [17][18][19] Inadequate social support is also common, which is associated with negative outcomes. [20][21][22] Caregiver social health remains an understudied area in TBI research, in part because no comprehensive measures of social health currently exist for caregivers of people with TBI.…”

How eLearning Can Decrease Challenges of Informal Family Caregivers of Service Members & Veterans with Invisible Injuries

“…Further studies reported that hundreds of thousands of soldiers suffered from a traumatic brain injury (TBI) either due to a military training accident during a deployment, or from combat exposures, such as IED blast waves (Brickell et al, 2018;Carlozzi et al, 2016;Conard et al, 2017;Delgado et al, 2018;Easom, Wang, K., Moore, Wang H., & Bauer, 2017;Saban et al, 2016;Stevens et al, 2015;Tanielian et al, 2008;Tanielian et al, 2013).…”

“…A SMV-PI's need for care sparked this phenomenon's need for MVCs to receive the knowledge and skills necessary to provide adequate care to this population (NAC, 2010;Ramchand et al, 2014). Researchers further determined that these veterans or service members required long-term and often indefinite support from a family member or caregiver (Carlozzi et al, 2016;Easom et al, 2017;Tanielian et al, 2008;Van Houtven et al, 2012). In addition to the new set of requirements that must be learned by the SMV-PI, there is a distinct and unique set of new tasks that their MVC must also learn.…”