Injury careers after blast exposure among combat veterans deployed to Iraq or Afghanistan

Social Science & Medicine 147 (2015) 309e316

Contents lists available at ScienceDirect

Social Science & Medicine journal homepage: www.elsevier.com/locate/socscimed

Injury careers after blast exposure among combat veterans deployed to Iraq or Afghanistan Rachel P. Chase a, *, Shannon A. McMahon a, b, Peter J. Winch a a b

Department of International Health, Johns Hopkins Bloomberg School of Public Health, 615 N Wolfe St, Baltimore, MD 21205, USA €t, Im Neuenheimer Feld 324, 69120 Heidelberg, Germany Institute of Public Health, Ruprecht-Karls-Universita

a r t i c l e i n f o

a b s t r a c t

Article history: Received 9 March 2015 Received in revised form 30 October 2015 Accepted 10 November 2015 Available online 17 November 2015

During the Iraq and Afghanistan wars, blasts were the most common cause of combat injuries, including traumatic brain injury (TBI). Prior to 2007, service members were not systematically screened for TBI, and estimates suggest that tens of thousands of mild TBIs went undiagnosed. This study sought to understand post-acute “injury careers,” documenting the life- and health-related narratives of veterans who were at high risk of undocumented TBI due to being blast-exposed before 2007. Researchers conducted 38 in-depth interviews between May 2013 and August 2014 with Army veterans who served in combatintense settings (n ¼ 16) and their family members (n ¼ 10). Respondents detailed a series of experiences in the months and years following blast exposure. We present this series as a model that draws upon the vernacular of participants who described veterans “downplaying” their injuries and later “detaching” themselves from friends, family, and communities, and “denying” or being “oblivious” to their circumstances until a “wake-up call” pushed them to “get help.” Looking to the future, veterans grapple with uncertainties related to personal identity and professional or social expectations. This model is presented within a member-checked metaphor of an individual being hurled into e and emerging from e a canyon. Policies and programs addressing veteran health, particularly among those exposed to multiple blasts prior to systematic TBI documentation, must consider the personal, social, and health system challenges faced by veterans and their families throughout their injury careers. © 2015 Elsevier Ltd. All rights reserved.

Keywords: Military personnel Veterans Invisible injuries Blast injuries Traumatic brain injury Mental health Combat injuries Health careseeking behavior

1. Introduction Military personnel engaged in Operation Enduring Freedom Afghanistan (OEF-A; 2001e2014) and Operation Iraqi Freedom (OIF; 2003e2010) encountered a greater number of explosive blasts e especially from improvised explosive devices (IEDs) e than service members of previous wars (Owens et al., 2008). Close-range blast exposures can be all-encompassing and full-body experiences, causing both immediate and long-term psychological effects and physical effects. Blast injuries can be primary (e.g., from overpressure due to the blast wave), secondary (e.g., penetrating wounds caused by shrapnel), tertiary (e.g., blunt injury from sudden acceleration of the body), or quaternary (e.g., flash burns from a blast's intense heat) (Cernak and Noble-Haeusslein, 2010). While similar combat injuries might have proven fatal decades ago, advances in both protective gear and emergency medicine have * Corresponding author. E-mail addresses: [email protected] (R.P. Chase), shannon.mcmahon@jhu. edu (S.A. McMahon), [email protected] (P.J. Winch). http://dx.doi.org/10.1016/j.socscimed.2015.11.015 0277-9536/© 2015 Elsevier Ltd. All rights reserved.

enhanced the survival rates, albeit with increased morbidities including traumatic brain injury (TBI), that is, a brain injury caused by an external force. Before the US military established routine screening for TBI in late 2006, an estimated 80% of deploymentrelated TBIs went undiagnosed (Chase and Nevin, 2015). It is unknown how service members with undiagnosed TBI experienced and responded to their situations medically, socially, and professionally. Although a physical injury, TBI can cause changes that can be perceived as physical or mental health issues. Attempts to study TBI-related experiences are complicated by continued difficulties in diagnosing and attributing symptoms to TBI. A growing body of research is now directed at understanding how a valid TBI diagnosis relates to signs, symptoms, brain scan imaging, injury exposure, and physiological damage (Cernak and Noble-Haeusslein, 2010; Hulkower et al., 2013; Taber et al., 2014). It is often difficult to distinguish which injuries are causing what signs and symptoms, thereby making TBI prognosis and treatment difficult and debatable. For example, both TBI and posttraumatic stress can cause similar neurochemical changes, irritability, anxiety,

310

R.P. Chase et al. / Social Science & Medicine 147 (2015) 309e316

depression, sleep disturbance, cognitive impairment, mood instability, aggression, memory problems, and apathy; both are also associated with suicidality and substance use disorders (Tanielian and Jaycox, 2008). Both might also be caused by similar combat exposures. Determining symptom causality is of practical importance in the case of veterans, especially because therapeutic decisions and disability assessments are predicated on these determinations. The long-term medical and social effects of severe and moderate TBI have been studied for decades (Ylvisaker et al., 2005). Mild TBIs e the most likely to go undiagnosed e are less well understood, in part due to a polarization of two ideological camps: those who claim that all uncomplicated mild TBIs resolve within 3 months (indicating that long-term studies of mild TBI-related experiences are misguided), and those who claim that a small proportion of mild TBIs result in chronic, brain-based effects (Ruff, 2011). This debate has immediate importance to service members and veterans for whom a short-term injury is treated differently from a chronic or progressive condition, both clinically and via the benefit structure of the military and Department of Veterans Affairs (VA). In the conflicts in Iraq and Afghanistan, an estimated 20% of service members sustained a TBI (Defense and Veterans Brain Injury Center, 2014), but most TBIs went undocumented prior to 2007, suggesting that thousands of veterans may be unknowingly grappling with this war wound (Chase and Nevin, 2015). Social science research plays an important role in understanding coping and careseeking issues for health conditions generally and TBIs specifically. Post-TBI changes in self-concept have been described among individuals with mild, moderate, or severe TBI as a “loss of self,” wherein individuals contend with a changed perception of themselves while also recognizing how others view them differently (Nochi, 1998). These individuals are also forced to rebuild “spheres of identity” as they contend with a new “tentatively balanced sense of self” (Muenchberger et al., 2008). Although other conditions can change and challenge self-identity (Charmaz, 1991), Nochi specifies how memory loss is an especially poignant TBI symptom: Memory allows us to sense that we know who we once were and, therefore, we can maintain our identity and move with confidence into our future. The concept of “illness careers,” as conceptualized for this study, dates to the mid-20th century if not earlier (Glaser and Strauss, 1968; Pescosolido et al., 1998). It is informed by illness narrative research (Charmaz, 1991), and shares a history with other career studies including Goffman's work on the “moral careers” of individuals institutionalized in “total institutions” such as prisons and psychiatric institutions (Goffman, 1961). In all career studies, emphasis is placed on how individuals' trajectories are shaped by context and an accumulation of experience. Due to continued difficulties in diagnosing combat-related TBI and sequelae, this study sought to build on existing social science, brain injury, and illness and patient career literature by understanding “injury careers” among blast-exposed war veterans who were at high risk of TBI during deployment and at high risk of having an uncertain injury status. These injury careers start with the contexts in which service members were placed at risk of an injury, then progress through the injury (if any), symptom development (if any, TBI related or not), careseeking (if any), and finally their prospects for the future. We present segments of these injury careers as described by combat veterans who were deployed to Iraq or Afghanistan before 2007 and exposed to potentially injurious combat. This time period was chosen because the lack of TBI screening policies prior to 2007 hindered access to immediate care, monitoring, and disability benefits related to TBI. The purpose of this work is to help researchers and practitioners understand experiences of veterans who faced not only a high risk of sustaining

multiple blast-induced TBIs but also uncertainty during their injury careers given the lack of e and debates regarding e diagnosis, documentation, and care. It is to be noted that we use the term “veterans” to describe those who served in the military regardless of whether they were active-duty, retired, or separated from the military at the time of the study. 2. Methods This study used grounded theory to explore life and careseeking experiences post blast exposure among combat veterans who served in “high-tempo” settings (wherein operations were constant and combat was frequent). Blasts can induce brain injury even without causing acute symptoms in the immediate aftermath (Taber et al., 2014). However, acute symptoms (such as loss of consciousness) are typically required for a positive TBI screening (VHA Directive 2010e012). In light of this paradoxical situation, the research team relied on exposure rather than diagnosis in determining participation. This and the exploratory nature of the research allowed us to investigate “the same order of disruption” across blast-exposed veterans and their families (Rosenfeld, 2006) as well as document experiences that do not fall under clear diagnostic categories. We have not sought to determine whether that disruption was due to specific physical or psychological injuries, but we have presented participant experiences in the manner that they were expressed to us in the “voice of the lifeworld,” which does not always align with the “voice of medicine” (Rosenfeld, 2006). 2.1. Informants The first author (RPC) conducted 38 in-depth interviews (lasting 1e2 h) with 26 respondents between May 2013 and August 2014. RPC used snowball sampling (Biernacki and Waldorf, 1981) to identify and recruit participants. RPC contacted or was contacted by nominated individuals via phone or e-mail. Four veterans contacted for this study did not respond. The authors sought information-rich cases consistent with intensity sampling (individuals with many or highly relevant experiences as described by others, especially previously recruited participants) (Patton, 2002). As a model emerged, theoretical sampling guided recruitment (Patton, 2002). Recruitment discussions started with a standardized introductory script followed by a discussion of the consent form. Veterans were eligible for the study if they were deployed with the U.S. Army to Iraq or Afghanistan at least once before 2007 and were exposed to potentially injurious combat during deployment. While not a requirement, all veteran respondents in this study were exposed to multiple blasts and described exposure to blasts or blows to the head that left them unconscious, disoriented, nauseated, or otherwise somatically affected; most received a delayed diagnosis of TBI through the military, VA, or private health-care system. Most veteran respondents had exited the military sometime between 2005 and 2010. Those still in the military expressed concern that their participation in the study might affect their military careers if discovered; therefore, we have provided only group-level information to minimize the risk of participant identification. Members of veterans' social networks (family members and friends) were eligible for the study if they were mentioned by a participant as having applicable injury career-related experiences. Eligibility was determined during a consent process that included an assessment of potential participants' capacity to consent (adapted from Jeste et al., 2007); consent was given verbally or in writing at participants' discretion. Members of the final sample ranged in age

R.P. Chase et al. / Social Science & Medicine 147 (2015) 309e316

311

(20se50s among veteran respondents, 20se70s among family members), gender (male and female veterans and family members), rank (enlisted and officer), separation status (current and former members of the military), diagnosis (with and without TBI diagnosis), and careseeking and care obtainment (minimal to extensive care sought or received).

by presenting the most recent iteration of the model (see Fig. 1 for the complete model). In each instance of this member-checking process, informants expressed strong agreement with the findings and, in some cases, elaborated on broader headings. This study was approved by the institutional review board of Johns Hopkins University Bloomberg School of Public Health.

2.2. Procedure

3. Findings

RPC began interviews by inviting participants to narrate experiences that they deemed relevant to the topic of TBI in the military. In early interviews, the researcher then prompted more detailed discussion by constructing a timeline with respondents. In later interviews, the timeline construction was abbreviated, and emphasis was placed on understanding how respondents' experiences could enhance or challenge an emergent model. In 12 instances, second interviews were conducted to complete a truncated initial interview, to aid interpretation of the first interview, or to conduct member checking (described below). Following each interview, RPC and the second author (SAM) discussed the interview content and emerging themes, which were more fully explored in later interviews (Corbin and Strauss, 1990). All interviews were transcribed and open- and in vivo-coded, with code outputs assessed via discussion between RPC and SAM. RPC and SAM conducted a delayed literature review at the midpoint of data collection that guided development of axial codes for the model and revealed established behavioral models in line with the data (Corbin and Strauss, 1990). The researchers sought to ensure reliability and internal validity. Throughout data collection, RPC and SAM shared memos, discussed relationships among concepts, and compared perspectives on emerging themes and concepts. The researchers repeated this process during the data-coding stage to ensure agreement and refine or modify understandings (Corbin and Strauss, 1990). RPC and SAM presented their findings to a senior researcher (PJW) to verify that the emerging model and its attendant concepts and themes were supported by the data. PJW encouraged the use of in vivo codes (phrases used by respondents) throughout the paper and in the model. RPC discussed the emerging model with a subset of informants (n ¼ 10). RPC began all member-checking interviews

When asked to narrate experiences that they deemed pertinent to the study, respondents often highlighted common themes in a roughly serial nature, which we have divided into “phases.” 3.1. Phase 1: Injury: “You just… had every nerve go off in your body” The veterans in this study described multiple exposures to blasts, typically while patrolling routes on foot or in unarmored vehicles. Veterans responded to the detectable risks of these tasks by adapting their equipment, but reported adaptations did not include increased head protection. In recounting their exposure to blasts, veterans described blacking out, having nosebleeds and headaches, sensing that their “insides had turned to Jell-O,” suffering “a full-body concussion,” “hearing a click, sparks, and waking up engulfed in flames,” “feeling the wind get knocked out … while getting whiplashed in a car wreck,” “seeing stars,” or being blinded by a flash and feeling “like my head was in a can.” A veteran described the immediate aftermath of an IED explosion: “There's … physical trauma from when the pressure wave has kind of a whole body effect on you. … there was this sort of blankness that goes through you. You just literally had every nerve go off in your body, and it's … like … your body (is) shutting down … it's like rebooting a computer. … And that's … what you see, this blank stare on the guys. A bit of separation from what's going on around them.” Several veterans related their experiences of blasts in two parts: What they remembered themselves and what they pieced together from others' accounts.

Fig. 1. The seven phases of the injury career model with in vivo codes within the canyon metaphor.

312

R.P. Chase et al. / Social Science & Medicine 147 (2015) 309e316

3.2. Phase 2. Downplaying: “If you're not bleeding, you're fine” Several veterans used the word “downplay” to describe how they, their commanders, and the health system generally minimized the experience and effects of combat experiences and acute symptoms, especially during deployments. Veterans used qualifiers when describing how they felt or behaved immediately after experiencing an injury, saying for example “I threw up a little bit,” “I kind of blacked out,” or “I just got, kinda got blown up.” One veteran described how a blast ripped through his truck, causing him to black out; he concluded the narrative with, “Luckily, no one got hurt.” Veterans who lost consciousness or had no memory of the experience tended to minimize the effects of the blast on themselves. One soldier who recalled only that he had “blacked out for a few seconds” was reported by others as being confused for at least a minute before regaining consciousness, behaving erratically, and not responding to his commander's orders. To cope and to maintain solidarity with the team, veterans often joked or laughed off a blast and returned to the field without delay. Veterans used phrases such as “acting funny” or “being an idiot” when referring to themselves immediately after a blast. They teased soldiers repeatedly exposed to blasts, calling them “cursed”: “You laugh at shit that is absolutely not funny. … you are laughing because you are happy that you are not dead.” This downplaying was fostered by superiors and colleagues who would highlight the need to “get the job done,” noting “if you're not bleeding, you're fine” whereas those with bleeding wounds or broken bones had “real issues”: “… if you had PTSD or something wrong with you … that was something you had to keep to yourself, and you dealt with on your own time. You were looked at as weak if you couldn't deal with your issues.” Veterans reported that they continued to patrol when their ears were ringing and they were too disoriented to perform duties. Unstable soldiers would be dispersed across teams to avoid having “all the idiots in one basket” and mentally unwell soldiers would be shifted to “the back seat” where they posed less danger to themselves and others. For reasons related to solidarity, pride, and denial, soldiers did not want their health concerns e especially mental health concerns e to exclude them from patrol duties: “You don't want to leave your soldiers … your guys. If there is a way that you can not leave, you take that way. … that mentality we had … was: we were family and we wouldn't leave each other for nothing.” Certainty regarding how often one was exposed to a potentially TBI-inducing blast wavered. Although most veterans recognized that they had been “shaken up” or had their “bell rung,” screening immediately after blast exposure was cursory or nonexistent before 2007. Veterans described being told to “walk it off” or “have a glass of water and try not to throw it up” by clinicians and their chain of command. Medics described feeling guilty because they “didn't do anything” to assess or document symptoms related to mental health or brain injury, adding “we didn't know. It wasn't part of my training and nobody told me to look for it.” Veterans deployed after 2010 described far more attention and care related to potential and diagnosed TBIs as more TBI screening was implemented. Veterans said their initial, cursory experiences with health care and peer pressure to downplay health concerns exacerbated delays

in seeking help. For example, veterans described a “no, not, never code” in post-deployment examinations wherein the chain of command pressured soldiers to deny mental health problems. Because units were screened together, those asked to stay after screenings were known to have violated the code and could be later harangued for “being weak,” “crazy,” or “having something wrong with them.” Veterans who ignored this pressure and reported problems such as headaches, anxiety, and sleep difficulties at postdeployment screening said they received care far more quickly and easily than their peers. However, veterans who proactively sought care through mental health providers in the military health system were often met with resistance, or they were told their concerns were “normal” and therefore did not warrant care. 3.3. Phase 3. Detaching from everything Veterans described returning from a combat-intense deployment and entering a “dark” period of life, e sometimes experienced while still active in the military, sometimes before and immediately after separation from the military. This period was characterized by veterans “detaching from everything,” sensing an “inability to feel,” “blocking it all out,” becoming “ostracized,” and engaging in “strange behavior” associated with disordered sleep, irritability, overreactions, memory loss, and depression: “… you just kind of block everything out and ignore all things. … You detach yourself from that emotional side and any pain.” Some veterans described how they and fellow veterans would buy motorcycles, binge drink (“get shitfaced” or “drink myself to sleep”) and engage in other risky behaviors including experimenting with drugs: “Everyone has some form of addiction that they grasp onto … sexual addiction, gambling addictions, everything. For me, it was drinking. Drinking was big … there was some drug use and alcohol and e just everything. Anything I could possibly do, I overindulged in.” Previously mundane tasks such as driving a car, going grocery shopping, or hearing loud noises could induce panic, particularly amid heavy traffic or crowds. For veterans who saw bridges and piles of trash used as hiding places for IEDs during deployment, these civilian sights often served as triggers. Veterans who had once enjoyed going to dinners, parties, and social events found and still find themselves declining invitations and feeling “turned off” from the world and from others. One veteran described an inability to feel compassion for his family despite still loving them. Others who experienced absence seizures described difficulties in maintaining personal and professional relationships because their “staring spells” were misconstrued as disinterest. 3.4. Phase 4. Being oblivious or in denial: “They're not going to ask for help” Veterans consistently said, “I didn't think anything was wrong with me.” They described denying or not perceiving changes within themselves that often lasted long after deployments; further, they were not aware that such changes could be symptoms of an injury or disorder (e.g., reduced coordination, memory loss, impulsivity, mood volatility, and absence seizures). When they did recognize such symptoms, they did not immediately view them as medical issues potentially related to their combat experiences.

R.P. Chase et al. / Social Science & Medicine 147 (2015) 309e316

Most veterans expressed frustration with memory loss. Veterans described forgetting medical appointments, names of acquaintances, tasks requested by employers, materials studied in school or vocational training, where they placed daily essentials (lunches, keys, or credit cards), steps in their daily routines, and their participation in conversations. However, it was hard for veterans to notice that they were forgetting things, or to quantify changes in forgetfulness (“I didn't realize how bad my memory was, how frequently forgetful I was.”). Veterans also described being callous, unkind, impulsive, and prone to bouts of rage e often without recognizing it until someone spoke up, as when one veteran's young daughter asked, “Dad, why are you being really mean to us?” Even if veterans recognized these issues, they usually attributed them e at least initially e to aging, stress, being tired or overworked, or as a part of readjusting to civilian life. Those still engaged within a military environment said that staying “oblivious” to changes in themselves was facilitated by unit reassignment between deployments (a new peer network could attribute staring spells and forgetfulness to personality quirks), competing priorities amid multiple redeployments, and living in an environment where certain behaviors are considered commonplace (e.g., risk taking, excessive alcohol consumption, and a temperamental nature). Among those who had returned to civilian life, unusual behaviors were often attributed to a rocky transition from a military career by family members and sometimes by veterans. However, most veterans said that they simply did not see that anything was wrong: “I didn't want to go (seek care) because I didn't think I had any problems.” In all cases, several months and sometimes years passed before medical attention was sought, and veterans often described “waiting it out” in hopes that their problems may resolve without intervention. 3.5. Phase 5. Wake-up call: “Wow, I need help” Veterans in this study often described reaching extreme lows e periods where they no longer recognized themselves e before a jolting event or series of events sparked an intention to seek care. Veterans and family members indicated that long-ignored problems worsened over time: “… as [my symptoms] slowly got worse, I got used to dealing with them. And, when you realize you have a problem, your problems are overwhelming … because you don't really notice them creeping up on you.” Several respondents described how they reached a point where they thought, “Wow, I need help,” because they “couldn't handle it anymore,” and realized that they “absolutely had to go,” symptoms “were only getting worse,” or “things wouldn't dissipate.” Several veterans reported that their situations became so difficult (e.g., a suicide attempt or a third DUI) that they sought care despite peer pressure against careseeking: “I got to a point where … I was jacked up and I said, ‘I don't give a shit what you think. I am losing my freaking mind. I need to see that doctor.’ “. Wake-up calls were often amplifications of issues observed earlier in injury careers. Veterans recognized that they were not just frequently getting drunk and being argumentative. They would “drink to the point of getting shit-faced and trying to fight with people.” Rather than confining a disagreement with a wife or girlfriend to arguing, they might envision “smashing her face into a pole.” Instead of amicably resolving problems with a commanding officer, they might verbally assault the officer and be subsequently suspended. Veterans described recognizing the potential danger of their actions either on their own (“I was going to end up killing myself or killing somebody else”) or through others' reactions (as

313

when a veteran's wife screamed in terror when he drove through successive red lights during an absence seizure). Nonetheless, the events that ultimately prompted veterans to seek care were not always life-threatening or dramatic. Several veterans described new tendencies such as stuttering while speaking, losing track of sequential thought processes, and forgetting daily routines or destinations while driving. For nearly all veterans, activities that previously involved minimal mental energy now required extensive, deliberate consideration and secondguessing or repetition. This forgetfulness undermined their identity: “If I don't write it down, it is not going to happen. I have to remind myself multiple times. … I never had that problem before.” Physical pain e especially migraines e and sleep difficulties often prompted veterans to think “maybe it's time I go talk to someone.” Most veterans who reported having migraines said, “I never experienced a migraine before in my life,” but they frequently experienced “debilitating” and “mind-numbing” migraines they could not ignore. Veterans described waking up “in pools of sweat,” “like someone poured a pitcher of water over me.” In one case, a veteran described awaking to realize he was “… standing in the middle of my bed screaming.” Spouses also reported that veterans would stop breathing in the middle of the night, “make noises like choking” while asleep, assume sleepwalking night patrols, or suffer from incessant nightmares. Several veterans described waking up from nightmares to find themselves assaulting their partner. A wife grew scared of her husband when he nearly strangled her on one occasion as she tried to wake him while he was sleepwalking (she later began waking him with a broomstick). Other symptoms that veterans responded to by seeking care included soreness from grinding teeth, light sensitivity, ear ringing, and vertigo. In this sample, intimate partners often catalyzed the “wake-up call.” Partners would threaten to leave, file for (or obtain) a divorce, or move out. One veteran stated that he sought care at a military hospital to appease his wife: “I went in and I told them, ‘Hey, listen, there is nothing wrong with me. … Just clear me, and I'll show this shit to my wife. Under the rug and done.’” Coworkers, employers, and friends were also described as instrumental in the wake-up call after they told veterans about their erratic behavior or insisted on making a medical appointment (“My friend hauled me [to an inpatient facility] and dropped me off” or “My buddy … a social worker … was like, ‘Migraines are not PTSD, man … you need to get checked for a TBI.”) 3.6. Phase 6. Getting help: “You have got to make it easier for them.” Although it is beyond the scope of this paper to describe the careseeking experience in detail (further detailed in Chase et al., in press), veterans and their families described key barriers in both the military and VA health systems, including: feeling misunderstood, discredited, or treated in a cursory manner by providers, and sensing that providers did not have the skills and abilities to address veteran concerns, especially related to chronic pain and mental health. Most veterans felt that they had to “fight” military and VA medical systems to access adequate care and that they could not rely on those health systems for answers: “I go to the TBI clinic, and they say that a lot of the symptoms are PTSD things, and when I go to the PTSD clinic, they say they are TBI things, so I don't ever get a clear answer.” Issues related to the bureaucratic nature of veteran health care coupled with issues of compensation, medical retirement, and disability benefits have additionally strained patienteprovider relationships; veterans said they sensed that providers were looking for “any way to deny” them, especially in the case of medical retirement boards in the military and disability status assignments in the VA. Key facilitators to receiving high-quality care included living

314

R.P. Chase et al. / Social Science & Medicine 147 (2015) 309e316

near or having access to a high-functioning facility, encountering an especially capable provider (even within a reportedly lowfunctioning facility), and being exposed to a blast during or after 2010. Veterans also described spouses as playing a critical role in facilitating careseeking. Careseeking termination was described in most cases as unsatisfactory, such as “I just kind of gave up” after multiple unproductive attempts to seek care, or after losing contact with the health system because “there is no outreach.” While one veteran reported a satisfactory conclusion to care after a year of comprehensive treatment at a military TBI clinic, two veterans who did not receive such treatment planned to permanently discontinue care in the military setting because it was “a waste of time,” and “they tell you to just get over it.” Other complaints centered on the nonconfidential nature of care (in the military), high provider turnover (in the VA), and reliance on overmedication to address symptoms. 3.7. Phase 7. New normal: “…there are just certain things I don't think will ever get better” When veterans discussed the future, they often distinguished between what they wanted and what they expected (with an emphasis on how their aspirations may be unattainable). One veteran used the phrase “define a new normal” when describing how he and other veterans now set goals that would have seemed mundane previously, but would be remarkable achievements now. Such goals included being able to “function as an adult,” “take care of myself,” engage with fellow community members in a “normal” way, maintain employment, and behave as an emotionally stable parent or spouse. Even veterans who reported success at home or in professional endeavors nevertheless felt internal strife regarding who they wanted to become versus who they currently were. In this sense, veterans who had previously identified as being mentally “quick” and “smart”, physically “coordinated” and resilient, emotionally stable, socially inclined, and fearless were frustrated with this disconnect in self-identity: “I hate it …. I rode bulls when I was nine years old. I scuba dived 80-feet deep at night when I was 15 years old. I've never feared anything. The two things I fear (today): losing my family and going to sleep. I'm actually scared at night to go to sleep because I don't know what is going to transpire and I don't have control of what is about to happen.” Veterans and families were skeptical of the ability of the military or VA health system to meet their needs. They expressed a desire to see increased acceptance and understanding of veterans facing similar difficulties, in the hopes such support could foster selfworth and recovery. 3.8. An injury career metaphor: being hurled into a canyon A conceptual model of the post-acute “injury careers” of blastexposed veterans emerged during author discussions and data collection (see Fig. 1). The transtheoretical model of behavior change (Prochaska and Velicer, 1997) and stages of grief (KüblerRoss, 1997) informed the phased structure of the model. The network-episode models (Pescosolido et al., 2010, pp. 44e62) and other career models (Fisher, 1987; Goffman, 1961) provided the concept of an illness career (termed here as an “injury career”) that accounted for the interactions between individuals seeking care and the social and health networks within which they are acting. By extending the “career” back to the context of the injury, our model emphasizes that the type, timing, and context of one's blast exposure and injury plays a role in the trajectory of one's injury career

(for example, veterans who downplayed multiple blast exposures while on 12-h patrols during a year-long deployment might not have downplayed an accidental blast exposure in a civilian setting such as a fireworks show). We also referred to Nochi's descriptions of “loss of self” among individuals with TBI (Nochi, 1998), which resonated with our findings. The model employs the metaphor of a canyon to show that, following blast exposure, veterans in this study are thrust into a rugged terrain upon experiencing an injury. Then, they navigate through six phases: downplaying, detaching, denial/being oblivious, a wake-up call, getting help, and a new normal. Given the extreme sense of separation from past-self and others that veterans in this study often described, we used a canyon as the paradigmatic terrain, signifying that soldiers would have to scale steep rock walls to return to the high, level ground from which they were thrown. Although Fig. 1 distills and presents a complex phenomenon, we caution that neither the veterans nor the paths they navigate be seen as identical across cases. The terrain might range from a small gully to the Grand Canyon. Even on the same terrain (or dealing with similar issues in the same health-care system), the pace and trajectory of movement varies, as does the extent to which veterans are affected by facilitators or setbacks. Thus, individuals are depicted as traversing a foreign and rugged landscape while coping with the challenges and advantages specific to that terrain. During member checking, veterans and family members expressed enthusiasm about the canyon metaphor. They emphasized that, for many, it was impossible to see or know whether there was a path out of the canyon, and to envision how hard ascending may be. “It's more like a canyon at night. How high do I have to go? For some people, it is little more than a culvert … If you have to climb 500 feet, it is going to be hard, but at least you know you are going to climb 500 feet. Someone might only have to climb ten feet, but if they can't see the top, ten feet can be just as daunting as the 500 feet.”

4. Discussion What began as TBI research might best be described as the study of uncertainty and misunderstanding surrounding invisible combat injuries. Veterans who served in high-intensity combat settings often feel misunderstood and, in many ways, estranged from those without such combat experiences. Consequences reverberate in their personal lives, eroding their social support systems; in their professional lives, limiting their ability to earn a living and progress in careers; and in their health-care experiences, diminishing their access to satisfactory medical attention. Unlike some illness career trajectories that project a constant downward directionality (Fisher, 1987), it was important for our injury career model to show that many veterans foresaw and demonstrated hard-earned gains. Using the metaphor of a terrain such as a canyon allowed us to convey sentiments expressed throughout interviews: that veterans were thrown into confusing low points in their lives where they felt separated both from others and their past selves; that they were often left disoriented, injured, without resources, and without aid from the systems that were supposed to help them; that the path to recovery was fraught with difficulties; and that trying to reach a new high point was seldom a matter of going back to where they started, but instead required finding a new normal that was never (in this sample) described as equal or superior to pre-injury normality. In great part, this process reflects Nochi's discussion of loss of self after TBI. In terms of “loss of clear self-knowledge,” veterans

R.P. Chase et al. / Social Science & Medicine 147 (2015) 309e316

described being unable to recognize their own emotions or remember life episodes. In terms of “loss of self by comparison,” veterans described loss of a past self who was fearless, a gifted learner, a lover, an athlete, or simply “normal.” Finally, Nochi's descriptions of “loss of self in the eyes of others” were reflected in veterans' descriptions of interactions with family, friends, the general public, and the medical system, which often left veterans feeling challenged, undermined, or somehow inferior. Our findings are also similar to that of Muenchberger and colleagues, whose lifecourse analysis of individuals who had incurred TBIs revealed the “protracted and cyclical nature of identity redevelopment following a TBI” with discernible phases parallel to those described herein, including denial, acceptance, reintegration, and regaining of the self (Muenchberger et al., 2008). Like Muenchberger et al., we emphasize that some phases in Fig. 1 lend themselves more strongly to a certain loss of self (such as denial emphasizing loss of clear self-knowledge), but each of these losses permeate the model and appear to create added adversity throughout the injury career. Results from this study also highlight many ways in which veterans cope with injury-career challenges. Behavioral research has long considered how an individual and their social network respond to the stress of an event or experience. The transactional model of stress and coping (Lazarus and Folkman, 1987), particularly influential to the study of TBI, states that stress is a product of interactions between an individual and their environment wherein the individual appraises the requirements of a situation and their own resources to respond; stress-mediating strategies reduce the source of stress (problem-focused coping) or modify emotional responses to the source of stress (emotion-focused coping) (Lazarus and Folkman, 1987). Ridley drew upon the transactional model in her work on denial among families of individuals with TBI (Ridley, 1989). Consistent with the idea of “self-deceptive enhancement” (Silver et al., 2011, p. 308), Ridley argued that denial is not necessarily maladaptive, and can instead be viewed as a redefinition of the problem, that is, emotion-focused coping. Kendall and Terry tested a transactional model-based hypothesis that problemfocused coping among patients with TBI in rehabilitation programs would result in greater emotional well-being when events were relatively controllable, whereas emotion-focused coping would best apply when events were uncontrollable (Kendall and Terry, 2008). The study concluded, however, that problemfocused coping did not significantly improve emotional wellbeing despite improvements in functional outcomes. Overall, Ridley's and Kendall and Terry's findings emphasize that coping is a complex process that might not align with medically perceived truths, and researchers cannot assume that improvements in one's ability to function (in the medical voice) can be equated with emotional or identity resolution (in the lifeworld voice). As reported in this study, veterans adopted coping mechanisms throughout their injury careers: they proactively mitigated risk intheater while continuing to perform risk-inherent duties; they engaged in denial or self-deceptive enhancement both to perform their duties in a high-risk environment and to overcome symptomimposed barriers; and they used self-medication, memory tools, and emotional resilience in the face of internal and external obstacles. Consistent with Kendall and Terry's findings that improved functionality did not necessarily translate into improved emotional well-being, even veterans who reported professional success and stability at home expressed uncertainty and fear for their futures. They described expending more effort to obtain normal results and perceived that their ability to reliably support themselves and their families was threatened. Whether individuals with TBI are working harder to achieve normal levels of functionality is currently being explored in neuroimaging and functional outcome research (Cantor et al., 2008; Kohl et al., 2009), and its implications warrant more

315

attention in the therapeutic and social science literature. Although this injury career model was designed specifically for Army veterans of a certain period at high risk of TBI and following blast exposure, it can be applied to other intense experiences. The canyon metaphor might resonate with combat veterans who have not been exposed to blasts; the phases and loss of self might appear similar to those experienced by individuals with neurodegenerative disorders (Foley et al., 2014); and the difficulties in understanding and seeking care for vague symptoms may mirror those of individuals with autoimmune and other hard-to-diagnose disorders (Stockl, 2007). We have sought to delineate a process that can be operationalized in research and help practitioners address phase-specific issues. Like the network-episode model (Pescosolido et al., 1998), this model provides insight into how individuals enter, navigate, and exit their injury career. It distinguishes itself by using an intuitive and relatable metaphor (McCrickerd, 2000) e one that many veterans and family members in this study appreciated because it highlights issues that were found to be the most pertinent for this population. It also employs terms obtained from in vivo codes, reflecting the ways in which veterans and families relate post-injury experiences e an important step toward bridging the medical and research communities. With further development and testing, this model may prove valuable in personal and clinical settings. It might be expanded upon by exploring the role of gender and warrior identity, which might be especially useful as combat positions are increasingly opened to women in the US military. Our hope is that this research sparks further interest in the unique and shared components of veteran experiences coping with stigmatized, hard-to-detect, and hard-to-diagnose conditions such as TBI. We believe this field of study can be enhanced via research e similar to Kendall and Terry's longitudinal study of coping (Kendall and Terry, 2008) e that assesses the utility of problem-focused and emotion-focused coping in the trajectories of veterans exposed to multiple blasts and potentially multiple brain injuries. 5. Limitations and interpretive considerations Although blast-related TBIs have been increasingly studied, at present, they are prone to ambiguity in terms of risk, diagnosis, and symptomology. In documenting the experiences of veterans and families in their own words, we hope to provide practitioners and researchers with an appreciation of the extent to which veterans and families contend with multiple challenges and changing priorities in the aftermath of blast exposure. In doing so, we wish to reinforce that the experiences presented here include those that may not be related directly to blast exposure (readjustment difficulties, for example) but remain relevant to understanding the experiences of blast-exposed veterans and families. Some enrolled veterans delayed participation, citing concerns that the interview could be too stressful or could negatively affect their professional careers, or that they had difficulty recalling dates and keeping non-routine appointments due to the nature of their injury. During the interviews, the first author did not probe further on salient but sensitive topics if participants seemed upset or indicated that they were uninterested in further discussing those points. All symptoms and diagnoses were retrospectively self-reported by veterans and family members. As a result, the symptoms discussed were those that participants perceived, remembered, categorized as symptoms, were comfortable sharing, and deemed pertinent to the topic of TBI and their injury careers. However, veterans reported lacking memory of events, lacking awareness of symptoms, and forgetting to report symptoms to providers. We must assume that similar issues affected the data collected for this study.

316

R.P. Chase et al. / Social Science & Medicine 147 (2015) 309e316

Acknowledgments The National Institute of Mental Health of the National Institutes of Health supported Shannon A. McMahon via an Individual Predoctoral Fellowship (Parent F31) the “Ruth L. Kirschstein National Research Service Award (NRSA)” (Award F31MH095653). The content is the responsibility of the authors and does not necessarily represent the National Institutes of Health or the United States Government. The authors wish to acknowledge Dr. Mary Cwik, Dr. Namrita Singh, Paul Horn, and the veterans and family members who participated in this study. References Biernacki, P., Waldorf, D., 1981. Snowball sampling: problems and techniques of chain referral sampling. Sociol. Methods Res. 10 (2), 141e163. http://dx.doi.org/ 10.1177/004912418101000205. Cantor, J.B., Ashman, T., Gordon, W., Ginsberg, A., Engmann, C., Egan, M., Flanagan, S., 2008. Fatigue after traumatic brain injury and its impact on participation and quality of life. J. Head Trauma Rehabil. 23 (1), 41e51. Cernak, I., Noble-Haeusslein, L.J., 2010. Traumatic brain injury: an overview of pathobiology with emphasis on military populations. J. Cereb. Blood Flow Metab. Off. J. Int. Soc. Cereb. Blood Flow Metab. 30 (2), 255e266. http:// dx.doi.org/10.1038/jcbfm.2009.203. Charmaz, K., 1991. Good Days, Bad Days: The Self in Chronic Illness and Time. Rutgers University Press. Retrieved from https://books.google.com/books? id¼8CYzSaI4oUQC&pgis¼1. Chase, R.P., McMahon, S.A., Winch, P.J., 2015. “Tell Me what You Don't Remember”: Careseeking Facilitators and Barriers in the Decade Following Repetitive Blastexposure Among Army Combat Veterans. (Military Medicine) (in press). Chase, R.P., Nevin, R.L., 2015. Population estimates of undocumented incident traumatic brain injuries among combat-deployed US military personnel. J. Head Trauma Rehabil. 30 (1), E57eE64. http://dx.doi.org/10.1097/ HTR.0000000000000061. Corbin, J., Strauss, A.L., 1990. Grounded theory research: procedures, canons, and evaluative criteria. Qual. Sociol. 13 (1), 3e21. http://dx.doi.org/10.1007/ BF00988593. Defense and Veterans Brain Injury Center, 2014. What are the risks and costs of traumatic brain injury (TBI) for military personnel and veterans? Retrieved September 5, 2014, from http://dvbic.dcoe.mil/tbi-awareness-prevention/ article/what-are-risks-and-costs-traumatic-brain-injury-tbi-military. . Fisher, B.J., 1987. Illness career descent in institutions for the elderly. Qual. Sociol. 10 (2), 132e145. http://dx.doi.org/10.1007/BF00988525. Foley, G., Timonen, V., Hardiman, O., 2014. Exerting control and adapting to loss in amyotrophic lateral sclerosis. Soc. Sci. Med. (1982) 101, 113e119. http:// dx.doi.org/10.1016/j.socscimed.2013.11.003. Glaser, B.G., Strauss, A.L., 1968. A Time for Dying. Aldine Publishing, Chicago. Retrieved from http://books.google.com/books? hl¼en&lr¼&id¼Q3MmDOVVBSEC&pgis¼1. Goffman, E., 1961. Asylums: Essays on the Social Situation of Mental Patients and Other Inmates. Anchor Books. Retrieved from http://books.google.com/books? id¼2bZNAAAAMAAJ&pgis¼1. Hulkower, M.B., Poliak, D.B., Rosenbaum, S.B., Zimmerman, M.E., Lipton, M.L., 2013. A decade of DTI in traumatic brain injury: 10 years and 100 articles later. Am. J. Neuroradiol. 34, 2064e2074. http://dx.doi.org/10.3174/ajnr.A3395. Jeste, D.V., Palmer, B.W., Appelbaum, P.S., Golshan, S., Glorioso, D., Dunn, L.B., Kraemer, H.C., 2007. A new brief instrument for assessing decisional capacity

for clinical research. Arch. General Psychiatry 64 (8), 966e974. http:// dx.doi.org/10.1001/archpsyc.64.8.966. Kendall, E., Terry, D.J., 2008. Understanding adjustment following traumatic brain injury: is the goodness-of-fit coping hypothesis useful? Soc. Sci. Med. 67 (8), 1217e1224. http://dx.doi.org/10.1016/j.socscimed.2008.05.033. Kohl, A.D., Wylie, G.R., Genova, H.M., Hillary, F.G., Deluca, J., 2009. The neural correlates of cognitive fatigue in traumatic brain injury using functional MRI. Brain Inj. [BI] 23 (5), 420e432. http://dx.doi.org/10.1080/02699050902788519. Kübler-Ross, E., 1997. On Death and Dying (Reprint ed.). Scribner, New York. Lazarus, R.S., Folkman, S., 1987. Transactional theory and research on emotions and coping. Eur. J. Personality 1 (3), 141e169. http://dx.doi.org/10.1002/ per.2410010304. McCrickerd, J., 2000. Metaphors, models and organisational ethics in health care. J. Med. Ethics 26 (5), 340e345. http://dx.doi.org/10.1136/jme.26.5.340. Muenchberger, H., Kendall, E., Neal, R., 2008. Identity transition following traumatic brain injury: a dynamic process of contraction, expansion and tentative balance. Brain Inj. 22 (12), 979e992. http://dx.doi.org/10.1080/02699050802530532. Nochi, M., 1998. “Loss of self” in the narratives of people with traumatic brain injuries: a qualitative analysis. Soc. Sci. Med. 46 (7), 869e878. http://dx.doi.org/ 10.1016/S0277-9536(97)00211-6. Owens, B.D., Kragh, J.F., Wenke, J.C., Macaitis, J., Wade, C.E., Holcomb, J.B., 2008. Combat wounds in operation iraqi freedom and operation enduring freedom. J. Trauma 64 (2), 295e299. http://dx.doi.org/10.1097/TA.0b013e318163b875. Patton, M.Q., 2002. Qualitative Research & Evaluation Methods, third ed. Sage Publications, Inc, Thousand Oaks, CA. Retrieved from http://books.google.com/ books?id¼FjBw2oi8El4C. Pescosolido, B.A., Gardner, C.B., Lubell, K.M., 1998. How people get into mental health services: stories of choice, coercion and “muddling through” from “firsttimers”. Soc. Sci. Med. 46 (2), 275e286. Retrieved from http://www.ncbi.nlm. nih.gov/pubmed/9447648. Pescosolido, B.A., Martin, J.K., McLeod, J.D., Rogers, A., 2010. Handbook of the Sociology of Health, Illness, and Healing: A Blueprint for the 21st Century. Springer. Prochaska, J.O., Velicer, W.F., 1997. The transtheoretical model of behavior change. Am. J. Health Promotion1 12 (1), 38e48. http://dx.doi.org/10.4278/0890-117112.1.38. Ridley, B., 1989. Family response in head injury: denial... or hope for the future? Soc. Sci. Med. 29 (4), 555e561. Rosenfeld, D., 2006. Similarities and differences between acute illness and injury narratives and their implications for medical sociology. Soc. Theory Health 4 (1), 64e84. http://dx.doi.org/10.1057/palgrave.sth.8700064. Ruff, R.M., 2011. Mild traumatic brain injury and neural recovery: rethinking the debate. NeuroRehabilitation 28 (3), 167e180. http://dx.doi.org/10.3233/NRE2011-0646. Silver, J.M., McAllister, T.W., Yudofsky, S.C., 2011. Textbook of Traumatic Brain Injury, second ed. American Psychiatric Publishing, Inc, Arlington, VA. Retrieved from http://books.google.com/books?id¼N_lVQ7Z-YooC. Stockl, A., 2007. Complex syndromes, ambivalent diagnosis, and existential uncertainty: the case of Systemic Lupus Erythematosus (SLE). Soc. Sci. Med. 65 (7), 1549e1559. http://dx.doi.org/10.1016/j.socscimed.2007.05.016. Taber, K.H., Hurley, R.A., Haswell, C.C., Rowland, J.A., Hurt, S.D., Lamar, C.D., Morey, R.A., 2014. White matter compromise in veterans exposed to primary blast forces. J. Head Trauma Rehabil. http://dx.doi.org/10.1097/ HTR.0000000000000030. Tanielian, T.L., Jaycox, L.H., 2008. In: Invisible wounds of war: psychological and cognitive injuries, their consequences, and services to assist recovery. Rand Corporation. Ylvisaker, M., Turkstra, L.S., Coelho, C., 2005. Behavioral and social interventions for individuals with traumatic brain injury: a summary of the research with clinical implications. Seminars Speech Lang. 26 (4), 256e267. http://dx.doi.org/10.1055/ s-2005-922104.