MILITARY M EDICINE, 179, 8:849, 2014
Chasing the Care: Soldiers Experience Following Combat-Related Mild Traumatic Brain Injury MAJ Kyong Hyatt, AN USA*; Linda L Davis, RN, ANP, FAAN, PhDf; Julie Barroso, RN, ANP, FAAN, PhDf
ABSTRACT Objective: One of the most common, yet most difficult to detect injuries sustained by U.S. soldiers in Iraq and Afghanistan is mild traumatic brain injury (mTBI). Left untreated, mTBI can negatively impact soldiers’ postdeployment adjustment. This research describes the rehabilitation expetiences of soldiers with a history of mTBI and their spouses. Method: Nine soldiers with mTBI and their spouses participated in the study. A total of 27 interviews were conducted exploring couples’ post-mTBI rehabilitation experiences. Participants consisted of active duty soldiers with mTBI who had returned from deployment within 2 years, and their civilian spouses. Strauss and Corbin’s grounded theory methodology was used to collect and analyze the data. Findings: The majority of the soldiers and spouses who participated (16/18) indicated that uncertain prognosis and symptom management were the greatest challenges of postmTBI. Other challenges, such as delayed diagnosis, limited access to mental health care, and difficulty navigating an unfamiliar military health care system was also reported. Conclusions: Because of mTBI’s lack of visible manifestation, soldiers may confuse their mTBI symptoms with those of other deployment-related injuries and this leads to a delay in treatment. Future research should explore the standardization of post-mTBI rehabilitation programs and the effective ness of soldier education to promote early detection and treatment.
I get right there on the thing [post deployment health screening] a doctor will contact you and no one ever contacts me, the only help I’ve received is help I’ve sought, help I’ve gone after. (S05)
INTRODUCTION Mild traumatic brain injury (mTBI) is a growing concern for both military and civilian populations because of its high treat ment costs and potential long-term effects.1-5 A majority of existing studies define mTBI as an injury to the head as a result of blunt trauma or acceleration or deceleration forces that result in one or more of the following conditions: confusion, disorientation, impaired consciousness, memory dysfunction (around the time of injury), and/or loss of consciousness last ing less than 30 minutes.3-5 Sosin et al suggest as many as 75% of brain injuries are considered mild.3-6 It is widely accepted that the first year after brain injury is a critical time for recovery; therefore, early detection, appropriate treatment, and effective rehabilitation for individuals who are at risk for developing long-term sequelae post-mTBI is important to both patients and health care providers.7 One segment of the population that has seen a drastic increase in mTBIs in recent years is military service mem
*Walter Reed National Military Medical Center, 8901 Wisconsin Ave nue, Building 17B, Suite 3E, Room 3125, Bethesda, MD 20889. fDuke University, 307 Trent Drive, Durham, NC 27710. This article was presented in “Joining Forces at Duke University School of Nursing” (podium) at Duke University—Durham, NC, December 13, 2012, and in “National Capital Area TBI Research Symposium” (poster) at Center for Neuroscience and Regenerative Medicine— NIH, Bethesda, MD, April 29-30. 2013. doi: 10.7205/MILMED-D-13-00526
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bers. More than 320,000 (20%) of the approximately 1.9 mil lion service members who served in Iraq and Afghanistan meet the diagnostic criteria for mTBI, which is considered the most widespread and undertreated injury of both wars.8-10 Despite this increase in incidence, there are few published studies that have explored the challenges and the effects of early post-mTBI treatment for soldiers. Early diagnosis and treatment are important aspects of successful adjustment after any brain injury; however, numer ous factors complicate early detection and treatment follow ing mTBI. These factors include varying symptoms, the fact that post-mTBI impairments are not immediately noticeable, and the absence of formal rehabilitation resources that target the variable trajectory of mTBI. Highly idiosyncratic psychological/cognitive symptoms and a lack of associated physical signs make it difficult even for professional clinicians to recognize mTBI.3'411 For most individuals, post-mTBI symp toms will disappear within 3 months.12,13. However, 3% to 10% of individuals may experience persistent symptoms for months and even years after their initial injury.14-16 Studies also identified the effects that mTBI can have on family relationships. For example, Gan et al found that spouses were more likely to experience depression than other family mem bers following brain injury.17 Although soldiers with mTBI may not have problems with lack of health insurance, they may face other banders to treatment, such as delays in seeking and receiving care and/ or lack of availability of health care providers.5 Hoge et al reported a high level of mental illness after deployment among soldiers with mTBI.18 They found that negative beliefs about mental health care led to increased perceptions of stigma and decreased the likelihood that service members with mTBI would seek care.18 However, little published research exists on
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rehabilitation, interventions, and health outcomes following mTBI. Therefore, the puipose of this study was to examine and describe post-mTBI recovery and rehabilitation from the perspective of soldiers and their spouses. Three research ques tions were asked: (1) How do soldiers and their spouses describe post-mTBI recovery and/or rehabilitation ? (2) What difficulties, challenges, or problems do soldiers and their spouses experience during post-mTBI recovery? (3) What management strategies do soldiers and their spouses use to cope with the rehabilitation challenges?
METHOD This study received approval from the Institutional Review Board of an Army Medical Center, a large southeastern uni versity, and a research grant organization. Child care was provided if requested, and each participant received a $20 gift certificate after completion of an individual interview. Strauss and Corbin’s grounded theory methodology allows theory to emerge from the data rather than beginning a study with a preconceived theory in mind. In this way, the resulting theory drawn from participants’ experiences will offer insight into the post-mTBI recovery and rehabilitation process. The process of rehabilitation was examined through the analysis of concepts and themes found in interviews with soldiers and their spouses. This study consisted of a series of interviews that explored the post-mTBI family reintegration process of soldiers with mTBI and their spouses. During the interviews, soldiers and their spouses indicated that receiving timely, appropriate education and rehabilitation was an inte gral part of their successful reintegration post-mTBI. There fore, the interview data from all participants that described rehabilitation was examined using Strauss and Corbin’s grounded theory methodology of constant comparison to ana lyze post-mTBI rehabilitation experiences.19
Sampling
Inclusion criteria for participants were as follows: (1) active duty soldiers with deployment-related mTBI; (2) legally married civilian spouses; (3) able to understand English; and (4) soldiers with postdeployment between 2 and 24 months. Dual-military families (i.e., where the spouse was also a soldier) were excluded because of a potentially different dynamic in the family reintegration process. The researchers chose to include spouses in this study to explore the shared postinjury experiences and because of the possibility that spouses may be the first to notice the changes in post-mTBI soldiers. Research flyers/posters containing a description of the study were posted and distributed in the TBI clinic of a large Army Medical Center in the southeastern United States. After viewing a recruitment flyer, interested volun teers left their contact information with their providers or contacted the researcher directly. The researcher also recruited participants directly from the TBI clinic waiting room. Once
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it was determined that the soldier met the study inclusion criteria and agreed to participate, the researcher contacted the soldier’s spouse over the phone to obtain verbal consent and schedule a face-to-face meeting. The researcher dis cussed the purpose of the study and obtained informed con sent during the initial in-person contact with both the soldier and his/her spouse. Sampling was guided by theoretical sampling methods,19'20 which means that recruitment of study participants was guided by emerging and theoretically relevant constructs drawn from analysis of collected data.19 In the Army, over 60% of soldiers are married and less than 30 years old21; therefore, the first two couples for this study were selected to reflect this demo graphic. The first two couples were junior enlisted soldiers and their spouses, and both had young children. The data from the first couple interview was compared with the second cou ple interview. A common challenge reported by the first two couples was the soldier’s postinjury functional limitations. Therefore, the third couple was deliberately chosen to include a soldier without functional limitations in order to examine the applicability of the emerging concepts. Theoretical sampling decisions, guided by grounded theory methods, continued to evolve over the study data collection period.22
Data Collection
The best method of collecting participants’ perception is by interview. Therefore, the primary method for data collection was a face-to-face, semistructured interview. All interviews were conducted either at the participant’s home or in a pri vate room at the TBI Clinic. Nine soldier-spouse dyads yielded 27 interviews (9 conjoint soldier-spouse interviews, 9 spouse interviews, and 9 soldier interviews). The researcher used broad, open-ended queries during the conjoint interviews. These included questions such as: “Tell me about challenges or difficulties your family experienced receiving care after injury” or “Tell me about your experi ence of recovery after injury.” Separate interviews with the soldier and with the spouse were conducted approximately 1 week after the initial/joint interview. The open-ended ques tions for both joint and separate individual interviews were influenced by the ongoing analysis, and the direction of sub sequent interviews was guided by the emerging theory.19 The interview question became progressively more focused as core categories and related concepts were discovered. Both joint and individual interviews averaged 1 hour in length and data was collected until saturation was achieved (after the 27th interview). This supports the findings of Guest et al that suggest basic elements for meta-themes are present after 6 interviews and data saturation occur within the first 12 interviews.23 The researcher recorded field notes after each interview to capture the context surrounding the interview and the overall impression of events relating to participants’ situations. These notes and analytic memos were used to help with analysis of interview data.
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Data Analysis Data collection and analysis occurred simultaneously during this study. After each round of analysis, the researcher went back and gathered more focused data on the rehabilitation process to answer emerging analytic questions.24 Digitally recorded interviews were transcribed verbatim then ana lyzed using constant comparison across soldiers and marital dyads. Coding involved a process of examining interview data line-by-line, reassembling data based on relationships and patterns within and among the codes, and identifying core categories that were central to the phenomenon of the soldiers’ rehabilitation process.22 Credibility of the data was achieved through summarizing and debriefing with partici pants after each interview.
mTBI, emerged from this study. This is described with the following core categories: (1) advocating for care for postmTBI symptoms, (2) getting the care for post-mTBI symp toms, and (3) sharing the responsibility of care with health care providers. The relationship among core categories and related concepts is shown in Figure 1. Advocating for Care A majority of soldiers (7/9) and some spouses (4/9) indicated that a lack of understanding about mTBI created perceived conflict with providers, which in turn affected soldiers’ satis faction with their recovery. A majority of soldiers (7/9) per ceived a lack of empathy from providers for their post-mTBI symptoms and this appears to result in a lack of trust for the military health care system.
FINDINGS Soldier characteristics are depicted in Table 1 to provide context for narratives. Participants included 9 soldiers and their spouses. There were 5 white, 1 black, 2 Hispanic non white, and 1 “other” race for soldiers, and 7 white, 1 black, and 1 Hispanic nonwhite spouse. Soldiers’ ages ranged from 21 to 44 years old and their rank included 3 Officers, 4 Noncommissioned Officers, and 2 Enlisted soldiers. The number of deployments per soldier ranged from 1 to 6. Soldier participants are identified as SO and spouse partici pants are identified as SP. For example, SOI was injured 6 months into his first deployment and reported a clinically significant post-traumatic stress disorder (PTSD) symptom severity (54) and depression (11), as well as borderline abnormal anxiety (10). The PTSD checklist military version (PCL-M) scores 50 or greater, depression and anxiety scores 11 or greater are considered clinically significant. Mean time since injury for soldiers was 12 months and ranged from 6 to 18 months. Three soldiers experienced orthopedic injuries requiring surgeries, but none reported provider-diagnosed psychological comorbidities. The overarching theme of “chasing the care,” which sol diers described as the pheneomenon of having to be persistent in order to receive adequate and appropriate care following
TABLE I.
Being Aware o f the Injury
All soldiers in this study reported that they were not aware they had sustained an mTBI. This lack of awareness appears to contribute significantly to delays in receiving timely and appropriate care. In the interim (before they were correctly diagnosed and treated), soldiers reported self-managing post-mTBI symptoms with over-the-counter medications or living with uncontrolled symptoms, such as headaches, memory loss, and balance problems. One soldier reported taking 30 aspirin a day for 3 days until he started feeling dizzy. Another described his pre-mTBI diagnosis experience in this way: I wasn’t aware at the time---- I just didn’t know I had a TBI incident until I actually got back. I just dealt with the symptoms downrange. Moodiness, headaches, sensi tivity to the eyes, and I just dealt with those on a daily basis and my co-workers had to deal with it [my lashouts] on a daily basis.... I guess if you don’t lose a limb, or if you’re not bleeding out the ears or the eyes, you don’t think anything’s wrong. (S03) All soldiers who were diagnosed with an mTBI through postdeployment health screening indicated that they believed
Soldier Characteristics
ID
Gender
Age
Race
Deployment
T injury
PCL-M
Dep
Anx
SOI S02 S03 S04 S05 S06 S07 SOS S09
M M M F M M M M M
31 22 39 44 43 30 21 33 33
H B W H O W
1 3+ 2 3+ 3+ 3+ 1 3+ 3+
6 months 16 months 6 months 23 months 18 months 9 months 7 months 8 months 4 months
54 67 56 62 47 56 56 40 33
11 8 7 10 12 14 14 8 3
10 12 9 13 9 7 12 8 2
w w w
Anx, - Anxiety score from Hospital Anxiety and Depression Scale (HADS); B, Black; Dep, Depression score from HADS; Deployment, Number of deployments since 2001; F, Female; H, Hispanic-non-White; M, Male; PCL-M, PTSD Checklist Military Version; O, Other race; T injury, Time since injury; W. White. HADS sub scores = 11 or greater is clinically significant; PCL-M scores = 50 or greater is considered clinically significant.
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FIGURE 1.
A d v o ca tin g for C are:
O b ta in in g the C are:
S h arin g the R esp on sib ility o f C are:
-Being aware of the injury -Proving the injury -Perceiving conflict with providers -Perceiving lack of empathy from providers
-Seeking the care -Receiving delayed care -Receiving fragmented care -Navigating the healthcare system: Hard to find care
-Acquiring knowledge about mTBI -Working together for recovery
Chasing the care.
the symptoms experienced after exposure to an improvised explosive device (IED) blast were normal events that would gradually disappear. When symptoms continued, they reported being frustrated. Some soldiers (5/9) reported that these postmTBI symptoms impacted their ability to perform preinjury duties, resulting in feelings of self-doubt and betrayal. Proving the Injury
Soldiers who did not have a visible injury (5/9) reported having to convince providers of their post-mTBI symptoms before appropriate treatment and/or referral to a TBI special ist was provided. Furthermore, post-mTBI treatment was delayed for soldiers (3/9) who had been medically evacuated for other physical injuries. Three soldiers who experienced mTBI along with at least one other visible physical injury described significant delays in mTBI screening and treatment despite their initial complaints of memory loss, cognitive deficit, and other mental health needs. Soldiers who sustained a visible physical injury reported they were immediately evacuated out of the combat zone, and from that point for ward, they stated that their rehabilitation focused exclusively on the physical injury. This appeared to cause a delay in diagnosis and appropriate post-mTBI care. Perceiving Conflict With Health Care Providers
Over 50% of participants (6 soldiers and 3 spouses) indicated that they had experienced conflict or disagreement with health care providers about the soldier’s care plan. An over whelming majority of spouses (7/9) reported being left out and feeling that they were not welcome to participate in the soldier’s rehabilitation program. This resulted in the spouses perceiving a lack of empathy from health care providers or feeling that they were considered an “inconvenience.”
you get to go to TBI PT [physical therapy].” He further described his experiences: Lack of empathy from providers, my biggest issue with mental health ... I’ve actually had a mental health pro fessional up there tell me to stop being a pussy and suck it up. It was his exact words to me, and after that, I kind of just stopped dealing with them. (S02) For some soldiers (3/9), having an objective finding of mTBI injury (e.g., the results from a cognitive ability test) reassured them. They were concerned that in the absence of such evidence, providers might perceive them as being malingerers, and this impacted the way they sought care after injury. One soldier discussed her concerns that providers would not believe her: [I was worried that] people are going to start thinking I’m making it up. But luckily, there was objective data from my neuro-psych testing, which proved that I am not making it up. So once I find that out and they sent that to me, it’s been a lot easier to deal with, because I know that I’m not making it up. (S04) Obtaining the Care
The majority of soldiers (7/9) reported difficulties in obtaining care for their post-mTBI symptoms. The soldier’s lack of understanding about post-mTBI symptoms appears to result in delayed care. Furthermore, frequent provider turn over appears to negatively impact the continuity of care and contribute to the perception of fragmented care. This, in combination with the participants’ lack of familiarity in nav igating the health care system, may have contributed to fur ther delays in getting care and managing symptoms. Seeking the Care
Perceiving Lack of Empathy From Health Care Providers
Some soldiers (4/9) indicated a perception that their postmTBI symptoms were not being treated as a priority because providers could not see any visible injuries. One explained his perceptions: “Their [providers’] big thing is amputees, internal organs, and TBI is not [important]. It seems more like a category than a diagnosis. Oh well, you have a TBI so
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A majority of soldiers (7/9) reported that they had to actively seek appropriate treatment. They perceived that they had received care only after they and/or their spouses had asked repeatedly for it, or even demanded it. One soldier (S05) described his experience of post-mTBI care this way: “The only help I’ve received is help I’ve sought, help I’ve gone after." In many cases, the initial treatment was perceived as
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inappropriate or ineffective. As one spouse (SP5) put it: “They kept treating symptoms instead of investigating causes.” Receiving Delayed Care
Post-mTBI screening and evaluation by health care providers appears to be significantly affected by the presence or absence of visible signs of injury, such as scars or other physical injuries resulting from an IED exposure. Some sol diers (6/9) without visible injury did not seek immediate care because they did not understand or recognize mTBI symp toms. As one soldier put it, “1 didn’t know [I had sustained an injury]. Well, nothing you can see” (S06). This sentiment was echoed by all soldier participants. One had to be evacu ated to the nearest combat support hospital when he experi enced mTBI symptoms just days after an IED exposure: I didn’t have any physical injury you could see [at the time of IED exposure], so my medics went through treatments or whatever and I was at my firebase__ They medvacd [medically evacuated] me two days later because I was having problems. You know: getting dizzy, falling over, headaches, blurred vision, all that stuff, so they medvacd me . .. until I recovered. (S08) I wasn’t seeking any help until I was having some seri ous, serious balance issues. (S02) Receiving Fragmented Care
All participants, both soldiers and their spouses, indicated that they did not have any knowledge about mTBI before the injury. Soldiers reported being subjected to a battery of cog nitive tests and evaluation by multiple specialists before ini tiation of post-mTBI treatment. They also reported being seen by different providers even within a single clinic. Sol diers described feelings of frustration about reiterating the details of their medical histories to one provider after another. Navigating the Health Care System: Hard to Find Care
A majority of soldiers (8/9) indicated that they had to navi gate through multiple appointments with various specialists with minimal guidance. They reported extreme stress about coordinating all aspects of care, from making appointments to requesting referrals for specialty clinics. Soldiers often described their frustrations in terms like these: For me, it was kind of upsetting. I thought I was coming here one time to talk to somebody, and I’d be good. And then it’s, I go to the one appointment and it’s like you need to do this, and you got to do this for the next 5 weeks, and you need to come here and do therapy for this for whatever. And I talk to somebody else and they're like, we need you to set up this therapy to talk to this person. So for me, it’s draining. I’m not used to being at a hospital every day or every couple days doing some therapy or something. (S08)
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Sharing the Responsibility of Care All soldiers and spouses stated that responsibility for the soldier’s post-mTBI recovery should be shared among pro viders, soldiers, and their families. Participants indicated this shared responsibility should include increasing the soldier’s awareness of the injury through provider-initiated education, willingness to acquire knowledge about mTBI symptoms and treatment by soldiers and their spouses, and providing an appropriate recovery/rehabilitation plan in collaboration with patients. A majority of soldiers (8/9) believed the best out come following mTBI could be achieved by including their spouses in their rehabilitation plan at all levels. Acquiring Knowledge About mTBI
A majority of spouses (7/9) reported not knowing how to help their soldier and felt excluded from the soldier’s rehabilitation plan. All spouses indicated that they had no knowledge of mTBI until their soldiers were diagnosed with it. They described the feeling of being left in the dark regarding impor tant details of the soldier’s rehabilitation plan. The majority of spouses (7/9) stated that they resorted to self-education through online sources or secondhand information from their soldiers. Theses spouses reported that the latter was not ideal because the soldiers were often not forthcoming about their recovery progress. A majority of soldiers (7/9) indicated that they were reluctant to share their recovery progress because they did not want to burden their spouses. All participants reported that the predeployment education offered on mTBI did not help them because they did not pay much attention to it at the time. One spouse described the challenges she faced in attempting to help her soldier husband: He doesn’t share, because he doesn’t want to worry me. The only time [he shares] is when he’s in pain or some thing’s bothering him. He’ll get quiet and he’ll get dis tant. Or if his eyes are bothering him, you’ll find him wearing his sunglasses inside the house __ So I just give him his space and let him have his time until he feels better. He doesn’t just say, “Hey, I’m having a bad day. Leave me alone.” It’s [that] you have to read between the lines sometimes and figure out what’s going on. I just come to accept [that] and he tells what he can. That’s how we do it. (SP3) Working Together for Recovery
All participants expressed satisfaction with the TBI specialty care. They described feeling relieved to have been assigned a nurse case manager who coordinated all aspects of their reha bilitation. This decreased their stress about navigating the health care system and helped them to keep track of the soldiers appointments. Almost all (7/9) soldiers indicated that having a provider who was willing to listen to them and acknowledge their concerns motivated them to recover and adjust to postinjury changes.
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DISCUSSION As noted above, the overarching theme for soldiers’ rehabil itation process following mTBI was chasing the care. Both soldiers and spouses described their recovery/rehabilitation process as being aware of the injury, seeking care, acquiring knowledge about mTBI, and finally working together for recovery. The challenges and difficulties they described dur ing this period included proving the injury existed, conflicts with providers, lack of empathy from providers, receiving delayed and fragmented care, and navigating the military health care system. The management strategies they used included acquiring knowledge about mTBI and collaborating with health care providers. A majority of soldiers (7/9) indi cated that they had to advocate for their post-mTBI care. Soldiers appeared to receive delayed screening for mTBI because of fragmented care and high provider turnover. Lack of awareness postinjury appears to have a significant impact on soldiers’ likelihood of receiving timely interventions. All participants (both soldiers and spouses) had difficulty recog nizing mTBI symptoms, and stated that they attributed these symptoms to the general stress of deployment or to the expe rience of combat, rather than to the injury. A majority of soldiers (8/9) did not seek timely health care either for post-mTBI symptom management or rehabilitation. The reasons for the delay in seeking care varied from not recognizing that the changes were related to mTBI (attribut ing them instead to aftereffects of deployment) to thinking the symptoms were not serious enough to seek care and attempting to self-manage them. A majority of soldiers (7/9) stated that they sought care for their post-mTBI symptoms only at the urging of their spouses or were motivated to seek care because they simply could not manage the symptoms on their own. Perhaps the biggest contribution of this study is filling gaps within the existing mTBI literature on rehabilitation. For example, existing literature suggests that behavioral health care (e.g., counseling) is considered stigmatizing among ser vice members and keeps them from seeking the treatment they need.18'27 However, findings from this study suggest that the biggest barriers to the soldier’s care are the perceived lack of empathy from providers and inconsistency of care due to pro vider turnover. Only 1 soldier reported concerns about possible adverse effects on his career while receiving post-mTBI and mental health care. Meanwhile, the remaining 8 soldiers indi cated they were not as concerned about stigma as they were with the negative effect it would have on their marital relation ship if they discontinued the rehabilitation process. These study findings suggest the Army’s efforts to reduce the stigma reportedly associated with psychological health issues have been at least somewhat successful. Existing mTBI literature also suggests that the treatment of mTBI may be influenced by factors unrelated to the injury, such as preexisting psychosocial difficulties (e.g., depression and anxiety) and preinjury coping behaviors.26 Although all of the soldier participants in this study reported no preinjury
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psychosocial difficulties, they did report post-mTBI psycho social difficulties. The majority of participants (8/9) in this study expressed frustration when navigating the military health care system; several of them described this as chasing the care. This is one area where primary providers, nurses, and social workers may make a difference: by acting as care advocates and coordinators of services. Moreover, these find ings support the need for improved mTBI identification and education programs that include early screening, standard ized diagnosis, postinjury symptom recognition, and infor mation about rehabilitation processes in general. A second urgent need is to educate providers on how to interact with soldiers with mTBI to assure them they will be cared for. The findings from this study may lay the foundation for interven tion programs that can assist thousands of service members who are affected by mTBI.
LIMITATIONS AND IMPLICATION FOR FUTURE STUDY This study focused on soldiers recruited from a TBI clinic, where only injured individuals with residual symptoms were seen, thus excluding soldiers who recovered from an mTBI without symptoms or soldiers who were managing their symptoms without intervention by health care providers. Nevertheless, it is clear that some soldiers experience postmTBI symptoms that last beyond 1 year and that these symp toms may contribute to post-mTBI adjustment difficulties.4'27'28 As noted in this study, there is a need for provider education about mTBI and PTSD in service members. This education should ensure that providers are familiar with military cul ture (e.g., rank, military component), unique military cultural norms (e.g., discipline, loyalty, group cohesion and esprit de corps), and awareness of military resources. About 10% of patients with mTBI continue to have chronic symptoms; therefore, they should be evaluated for other medical prob lems to include psychological needs. The findings from this study support the idea that the patient-provider relationship is one of the most important aspects of a successful rehabilita tion plan. As part of the recovery plan, post-mTBI training/ education for patient should include symptoms of mTBI (such as headaches, dizziness, fatigue, irritability, and cogni tive impairment), hyperarousal response, treatment compli ance, and promote family and social support. Future studies should explore the effects of mTBI on the marital relation ship as well as the soldier’s postinjury adjustment.
CONCLUSION Although early diagnosis and treatment are important aspects of successful adjustment after mTBI, the absence of objective findings of impaired function at the time of the injury, the delays with reporting post-mTBI symptoms, the challenges soldiers face when they do report their post-mTBI symptoms, and the perceived difficulty in navigating unfamiliar military health care system make diagnosing and treating mTBI a challenge. Educating military families and providers about
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these challenges is a necessary step toward overcoming the effects of mTBI for the estimated 320,000 soldiers who have returned from war with this injury. ACKNOWLEDGEMENT The authors thank Dr. Charles Vacchiano, Dr. Susan Silva, Dr. Paul Lewis, and LCDR Billy Collins for their support. This study was funded by grant HU000111-1-TS14 (N11-C17) from the TriService Nursing Research Program.
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12. Gentilini M: Neuropsychological evaluation of mild head injury. J Neurol Neurosurg Psychiatry 1985; 48: 137-40. 13. Ruff RM, Weyer JC: Myths and mild traumatic brain injury. Psychol Inj Law 2009; 2: 34-42. 14. Binder LM: Persisting symptoms after mild head injury: a review of the postconcussive syndrome. J Clin Exp Neuropsychol 1986; 8: 323-46. 15. Mooney G, Speed J: The association between mild traumatic brain injury and psychiatric conditions. Brain Inj 2001; 15: 865-77. 16. Rutherford WH, Merrett JD. McDonald JR: Symptoms at one year following a concussion from minor head injuries. Brain Inj 1989; 10: 225-30. 17. Gan C, Campbell KA, Gemeinhardt M, McFadden GT: Predictors of family system functioning after brain injury. Brain Inj 2006; 20(6): 587-600. 18. Hoge CW, Castro CA, Messer SC, McGurk D, Cotting DI, Koffman RL: Combat duty in Iraq and Afghanistan, mental health problems, and barriers to care. N Eng J Med 2004; 351(1): 13-22. 19. Strauss A, Corbin J: Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory, Ed 2. Thousand Oaks, CA, Sage, 1998. 20. Pandit NR: The creation of theory:a recent application of the grounded theory method. Qual Rep 1996; 2(4): 1-13. 21. Department of Defense Personnel & Procurement Statistics: Defense Manpower Data, 2008. Defense Manpower Data Center. Available at http://www.statisticbrain.com/demographics-of-active-duty-u-s-miIitary/; accessed December 12, 2013. 22. Strauss A, Corbin J: Basics of Qualitative Research: Grounded Theory Procedures and Techniques. London, Sage, 1990. 23. Guest G, Bunce A, Johnson L: How many interviews are enough? Field Methods 2006; 18(1): 59-82. 24. Charmaz K: Constructing Grounded Theory: A Practical Guide Through Qualitative Analysis. Thousand Oaks, CA, Sage, 2006. 25. Pietrzak RH, Johnson DC, Goldstein MB, Malley JC, Southwick SM: Perceived stigma and barriers to mental health care utilization among OEF-OIF veterans. Psychiatr Serv 2009; 60(8): 1118-22. 26. Carlson K, Kehle S, Meis L: The assessment and treatment of individ uals with history of traumatic brain injury and post-traumatic stress disorder: A systematic review of the evidence. Washington, DC, Depart ment of Veterans Affairs Health Services Research & Development Ser vice, 2009. Available at http://www.hsrd.research.va.gov/publications/ esp/TBI-PTSD-2009.pdf; accessed June 28, 2012. 27. Hoge CW. McGurk D, Thomas JL, Cox AL, Engel CC, Castro CA: Mild traumatic brain injury in U.S. Soldiers returning from Iraq. N Engl J Med 2008; 358(5): 453-63. 28. Resnik L, Plow M, Jette A: Development of CRIS: Measure of commu nity reintegration of injured service members. J Rehabil Res Dev 2009; 46(4): 469-80.
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Chasing the Care: Soldiers Experience Following Combat-Related Mild Traumatic Brain Injury MAJ Kyong Hyatt, AN USA*; Linda L Davis, RN, ANP, FAAN, PhDf; Julie Barroso, RN, ANP, FAAN, PhDf
ABSTRACT Objective: One of the most common, yet most difficult to detect injuries sustained by U.S. soldiers in Iraq and Afghanistan is mild traumatic brain injury (mTBI). Left untreated, mTBI can negatively impact soldiers’ postdeployment adjustment. This research describes the rehabilitation expetiences of soldiers with a history of mTBI and their spouses. Method: Nine soldiers with mTBI and their spouses participated in the study. A total of 27 interviews were conducted exploring couples’ post-mTBI rehabilitation experiences. Participants consisted of active duty soldiers with mTBI who had returned from deployment within 2 years, and their civilian spouses. Strauss and Corbin’s grounded theory methodology was used to collect and analyze the data. Findings: The majority of the soldiers and spouses who participated (16/18) indicated that uncertain prognosis and symptom management were the greatest challenges of postmTBI. Other challenges, such as delayed diagnosis, limited access to mental health care, and difficulty navigating an unfamiliar military health care system was also reported. Conclusions: Because of mTBI’s lack of visible manifestation, soldiers may confuse their mTBI symptoms with those of other deployment-related injuries and this leads to a delay in treatment. Future research should explore the standardization of post-mTBI rehabilitation programs and the effective ness of soldier education to promote early detection and treatment.
I get right there on the thing [post deployment health screening] a doctor will contact you and no one ever contacts me, the only help I’ve received is help I’ve sought, help I’ve gone after. (S05)
INTRODUCTION Mild traumatic brain injury (mTBI) is a growing concern for both military and civilian populations because of its high treat ment costs and potential long-term effects.1-5 A majority of existing studies define mTBI as an injury to the head as a result of blunt trauma or acceleration or deceleration forces that result in one or more of the following conditions: confusion, disorientation, impaired consciousness, memory dysfunction (around the time of injury), and/or loss of consciousness last ing less than 30 minutes.3-5 Sosin et al suggest as many as 75% of brain injuries are considered mild.3-6 It is widely accepted that the first year after brain injury is a critical time for recovery; therefore, early detection, appropriate treatment, and effective rehabilitation for individuals who are at risk for developing long-term sequelae post-mTBI is important to both patients and health care providers.7 One segment of the population that has seen a drastic increase in mTBIs in recent years is military service mem
*Walter Reed National Military Medical Center, 8901 Wisconsin Ave nue, Building 17B, Suite 3E, Room 3125, Bethesda, MD 20889. fDuke University, 307 Trent Drive, Durham, NC 27710. This article was presented in “Joining Forces at Duke University School of Nursing” (podium) at Duke University—Durham, NC, December 13, 2012, and in “National Capital Area TBI Research Symposium” (poster) at Center for Neuroscience and Regenerative Medicine— NIH, Bethesda, MD, April 29-30. 2013. doi: 10.7205/MILMED-D-13-00526
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bers. More than 320,000 (20%) of the approximately 1.9 mil lion service members who served in Iraq and Afghanistan meet the diagnostic criteria for mTBI, which is considered the most widespread and undertreated injury of both wars.8-10 Despite this increase in incidence, there are few published studies that have explored the challenges and the effects of early post-mTBI treatment for soldiers. Early diagnosis and treatment are important aspects of successful adjustment after any brain injury; however, numer ous factors complicate early detection and treatment follow ing mTBI. These factors include varying symptoms, the fact that post-mTBI impairments are not immediately noticeable, and the absence of formal rehabilitation resources that target the variable trajectory of mTBI. Highly idiosyncratic psychological/cognitive symptoms and a lack of associated physical signs make it difficult even for professional clinicians to recognize mTBI.3'411 For most individuals, post-mTBI symp toms will disappear within 3 months.12,13. However, 3% to 10% of individuals may experience persistent symptoms for months and even years after their initial injury.14-16 Studies also identified the effects that mTBI can have on family relationships. For example, Gan et al found that spouses were more likely to experience depression than other family mem bers following brain injury.17 Although soldiers with mTBI may not have problems with lack of health insurance, they may face other banders to treatment, such as delays in seeking and receiving care and/ or lack of availability of health care providers.5 Hoge et al reported a high level of mental illness after deployment among soldiers with mTBI.18 They found that negative beliefs about mental health care led to increased perceptions of stigma and decreased the likelihood that service members with mTBI would seek care.18 However, little published research exists on
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rehabilitation, interventions, and health outcomes following mTBI. Therefore, the puipose of this study was to examine and describe post-mTBI recovery and rehabilitation from the perspective of soldiers and their spouses. Three research ques tions were asked: (1) How do soldiers and their spouses describe post-mTBI recovery and/or rehabilitation ? (2) What difficulties, challenges, or problems do soldiers and their spouses experience during post-mTBI recovery? (3) What management strategies do soldiers and their spouses use to cope with the rehabilitation challenges?
METHOD This study received approval from the Institutional Review Board of an Army Medical Center, a large southeastern uni versity, and a research grant organization. Child care was provided if requested, and each participant received a $20 gift certificate after completion of an individual interview. Strauss and Corbin’s grounded theory methodology allows theory to emerge from the data rather than beginning a study with a preconceived theory in mind. In this way, the resulting theory drawn from participants’ experiences will offer insight into the post-mTBI recovery and rehabilitation process. The process of rehabilitation was examined through the analysis of concepts and themes found in interviews with soldiers and their spouses. This study consisted of a series of interviews that explored the post-mTBI family reintegration process of soldiers with mTBI and their spouses. During the interviews, soldiers and their spouses indicated that receiving timely, appropriate education and rehabilitation was an inte gral part of their successful reintegration post-mTBI. There fore, the interview data from all participants that described rehabilitation was examined using Strauss and Corbin’s grounded theory methodology of constant comparison to ana lyze post-mTBI rehabilitation experiences.19
Sampling
Inclusion criteria for participants were as follows: (1) active duty soldiers with deployment-related mTBI; (2) legally married civilian spouses; (3) able to understand English; and (4) soldiers with postdeployment between 2 and 24 months. Dual-military families (i.e., where the spouse was also a soldier) were excluded because of a potentially different dynamic in the family reintegration process. The researchers chose to include spouses in this study to explore the shared postinjury experiences and because of the possibility that spouses may be the first to notice the changes in post-mTBI soldiers. Research flyers/posters containing a description of the study were posted and distributed in the TBI clinic of a large Army Medical Center in the southeastern United States. After viewing a recruitment flyer, interested volun teers left their contact information with their providers or contacted the researcher directly. The researcher also recruited participants directly from the TBI clinic waiting room. Once
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it was determined that the soldier met the study inclusion criteria and agreed to participate, the researcher contacted the soldier’s spouse over the phone to obtain verbal consent and schedule a face-to-face meeting. The researcher dis cussed the purpose of the study and obtained informed con sent during the initial in-person contact with both the soldier and his/her spouse. Sampling was guided by theoretical sampling methods,19'20 which means that recruitment of study participants was guided by emerging and theoretically relevant constructs drawn from analysis of collected data.19 In the Army, over 60% of soldiers are married and less than 30 years old21; therefore, the first two couples for this study were selected to reflect this demo graphic. The first two couples were junior enlisted soldiers and their spouses, and both had young children. The data from the first couple interview was compared with the second cou ple interview. A common challenge reported by the first two couples was the soldier’s postinjury functional limitations. Therefore, the third couple was deliberately chosen to include a soldier without functional limitations in order to examine the applicability of the emerging concepts. Theoretical sampling decisions, guided by grounded theory methods, continued to evolve over the study data collection period.22
Data Collection
The best method of collecting participants’ perception is by interview. Therefore, the primary method for data collection was a face-to-face, semistructured interview. All interviews were conducted either at the participant’s home or in a pri vate room at the TBI Clinic. Nine soldier-spouse dyads yielded 27 interviews (9 conjoint soldier-spouse interviews, 9 spouse interviews, and 9 soldier interviews). The researcher used broad, open-ended queries during the conjoint interviews. These included questions such as: “Tell me about challenges or difficulties your family experienced receiving care after injury” or “Tell me about your experi ence of recovery after injury.” Separate interviews with the soldier and with the spouse were conducted approximately 1 week after the initial/joint interview. The open-ended ques tions for both joint and separate individual interviews were influenced by the ongoing analysis, and the direction of sub sequent interviews was guided by the emerging theory.19 The interview question became progressively more focused as core categories and related concepts were discovered. Both joint and individual interviews averaged 1 hour in length and data was collected until saturation was achieved (after the 27th interview). This supports the findings of Guest et al that suggest basic elements for meta-themes are present after 6 interviews and data saturation occur within the first 12 interviews.23 The researcher recorded field notes after each interview to capture the context surrounding the interview and the overall impression of events relating to participants’ situations. These notes and analytic memos were used to help with analysis of interview data.
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Data Analysis Data collection and analysis occurred simultaneously during this study. After each round of analysis, the researcher went back and gathered more focused data on the rehabilitation process to answer emerging analytic questions.24 Digitally recorded interviews were transcribed verbatim then ana lyzed using constant comparison across soldiers and marital dyads. Coding involved a process of examining interview data line-by-line, reassembling data based on relationships and patterns within and among the codes, and identifying core categories that were central to the phenomenon of the soldiers’ rehabilitation process.22 Credibility of the data was achieved through summarizing and debriefing with partici pants after each interview.
mTBI, emerged from this study. This is described with the following core categories: (1) advocating for care for postmTBI symptoms, (2) getting the care for post-mTBI symp toms, and (3) sharing the responsibility of care with health care providers. The relationship among core categories and related concepts is shown in Figure 1. Advocating for Care A majority of soldiers (7/9) and some spouses (4/9) indicated that a lack of understanding about mTBI created perceived conflict with providers, which in turn affected soldiers’ satis faction with their recovery. A majority of soldiers (7/9) per ceived a lack of empathy from providers for their post-mTBI symptoms and this appears to result in a lack of trust for the military health care system.
FINDINGS Soldier characteristics are depicted in Table 1 to provide context for narratives. Participants included 9 soldiers and their spouses. There were 5 white, 1 black, 2 Hispanic non white, and 1 “other” race for soldiers, and 7 white, 1 black, and 1 Hispanic nonwhite spouse. Soldiers’ ages ranged from 21 to 44 years old and their rank included 3 Officers, 4 Noncommissioned Officers, and 2 Enlisted soldiers. The number of deployments per soldier ranged from 1 to 6. Soldier participants are identified as SO and spouse partici pants are identified as SP. For example, SOI was injured 6 months into his first deployment and reported a clinically significant post-traumatic stress disorder (PTSD) symptom severity (54) and depression (11), as well as borderline abnormal anxiety (10). The PTSD checklist military version (PCL-M) scores 50 or greater, depression and anxiety scores 11 or greater are considered clinically significant. Mean time since injury for soldiers was 12 months and ranged from 6 to 18 months. Three soldiers experienced orthopedic injuries requiring surgeries, but none reported provider-diagnosed psychological comorbidities. The overarching theme of “chasing the care,” which sol diers described as the pheneomenon of having to be persistent in order to receive adequate and appropriate care following
TABLE I.
Being Aware o f the Injury
All soldiers in this study reported that they were not aware they had sustained an mTBI. This lack of awareness appears to contribute significantly to delays in receiving timely and appropriate care. In the interim (before they were correctly diagnosed and treated), soldiers reported self-managing post-mTBI symptoms with over-the-counter medications or living with uncontrolled symptoms, such as headaches, memory loss, and balance problems. One soldier reported taking 30 aspirin a day for 3 days until he started feeling dizzy. Another described his pre-mTBI diagnosis experience in this way: I wasn’t aware at the time---- I just didn’t know I had a TBI incident until I actually got back. I just dealt with the symptoms downrange. Moodiness, headaches, sensi tivity to the eyes, and I just dealt with those on a daily basis and my co-workers had to deal with it [my lashouts] on a daily basis.... I guess if you don’t lose a limb, or if you’re not bleeding out the ears or the eyes, you don’t think anything’s wrong. (S03) All soldiers who were diagnosed with an mTBI through postdeployment health screening indicated that they believed
Soldier Characteristics
ID
Gender
Age
Race
Deployment
T injury
PCL-M
Dep
Anx
SOI S02 S03 S04 S05 S06 S07 SOS S09
M M M F M M M M M
31 22 39 44 43 30 21 33 33
H B W H O W
1 3+ 2 3+ 3+ 3+ 1 3+ 3+
6 months 16 months 6 months 23 months 18 months 9 months 7 months 8 months 4 months
54 67 56 62 47 56 56 40 33
11 8 7 10 12 14 14 8 3
10 12 9 13 9 7 12 8 2
w w w
Anx, - Anxiety score from Hospital Anxiety and Depression Scale (HADS); B, Black; Dep, Depression score from HADS; Deployment, Number of deployments since 2001; F, Female; H, Hispanic-non-White; M, Male; PCL-M, PTSD Checklist Military Version; O, Other race; T injury, Time since injury; W. White. HADS sub scores = 11 or greater is clinically significant; PCL-M scores = 50 or greater is considered clinically significant.
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FIGURE 1.
A d v o ca tin g for C are:
O b ta in in g the C are:
S h arin g the R esp on sib ility o f C are:
-Being aware of the injury -Proving the injury -Perceiving conflict with providers -Perceiving lack of empathy from providers
-Seeking the care -Receiving delayed care -Receiving fragmented care -Navigating the healthcare system: Hard to find care
-Acquiring knowledge about mTBI -Working together for recovery
Chasing the care.
the symptoms experienced after exposure to an improvised explosive device (IED) blast were normal events that would gradually disappear. When symptoms continued, they reported being frustrated. Some soldiers (5/9) reported that these postmTBI symptoms impacted their ability to perform preinjury duties, resulting in feelings of self-doubt and betrayal. Proving the Injury
Soldiers who did not have a visible injury (5/9) reported having to convince providers of their post-mTBI symptoms before appropriate treatment and/or referral to a TBI special ist was provided. Furthermore, post-mTBI treatment was delayed for soldiers (3/9) who had been medically evacuated for other physical injuries. Three soldiers who experienced mTBI along with at least one other visible physical injury described significant delays in mTBI screening and treatment despite their initial complaints of memory loss, cognitive deficit, and other mental health needs. Soldiers who sustained a visible physical injury reported they were immediately evacuated out of the combat zone, and from that point for ward, they stated that their rehabilitation focused exclusively on the physical injury. This appeared to cause a delay in diagnosis and appropriate post-mTBI care. Perceiving Conflict With Health Care Providers
Over 50% of participants (6 soldiers and 3 spouses) indicated that they had experienced conflict or disagreement with health care providers about the soldier’s care plan. An over whelming majority of spouses (7/9) reported being left out and feeling that they were not welcome to participate in the soldier’s rehabilitation program. This resulted in the spouses perceiving a lack of empathy from health care providers or feeling that they were considered an “inconvenience.”
you get to go to TBI PT [physical therapy].” He further described his experiences: Lack of empathy from providers, my biggest issue with mental health ... I’ve actually had a mental health pro fessional up there tell me to stop being a pussy and suck it up. It was his exact words to me, and after that, I kind of just stopped dealing with them. (S02) For some soldiers (3/9), having an objective finding of mTBI injury (e.g., the results from a cognitive ability test) reassured them. They were concerned that in the absence of such evidence, providers might perceive them as being malingerers, and this impacted the way they sought care after injury. One soldier discussed her concerns that providers would not believe her: [I was worried that] people are going to start thinking I’m making it up. But luckily, there was objective data from my neuro-psych testing, which proved that I am not making it up. So once I find that out and they sent that to me, it’s been a lot easier to deal with, because I know that I’m not making it up. (S04) Obtaining the Care
The majority of soldiers (7/9) reported difficulties in obtaining care for their post-mTBI symptoms. The soldier’s lack of understanding about post-mTBI symptoms appears to result in delayed care. Furthermore, frequent provider turn over appears to negatively impact the continuity of care and contribute to the perception of fragmented care. This, in combination with the participants’ lack of familiarity in nav igating the health care system, may have contributed to fur ther delays in getting care and managing symptoms. Seeking the Care
Perceiving Lack of Empathy From Health Care Providers
Some soldiers (4/9) indicated a perception that their postmTBI symptoms were not being treated as a priority because providers could not see any visible injuries. One explained his perceptions: “Their [providers’] big thing is amputees, internal organs, and TBI is not [important]. It seems more like a category than a diagnosis. Oh well, you have a TBI so
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A majority of soldiers (7/9) reported that they had to actively seek appropriate treatment. They perceived that they had received care only after they and/or their spouses had asked repeatedly for it, or even demanded it. One soldier (S05) described his experience of post-mTBI care this way: “The only help I’ve received is help I’ve sought, help I’ve gone after." In many cases, the initial treatment was perceived as
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inappropriate or ineffective. As one spouse (SP5) put it: “They kept treating symptoms instead of investigating causes.” Receiving Delayed Care
Post-mTBI screening and evaluation by health care providers appears to be significantly affected by the presence or absence of visible signs of injury, such as scars or other physical injuries resulting from an IED exposure. Some sol diers (6/9) without visible injury did not seek immediate care because they did not understand or recognize mTBI symp toms. As one soldier put it, “1 didn’t know [I had sustained an injury]. Well, nothing you can see” (S06). This sentiment was echoed by all soldier participants. One had to be evacu ated to the nearest combat support hospital when he experi enced mTBI symptoms just days after an IED exposure: I didn’t have any physical injury you could see [at the time of IED exposure], so my medics went through treatments or whatever and I was at my firebase__ They medvacd [medically evacuated] me two days later because I was having problems. You know: getting dizzy, falling over, headaches, blurred vision, all that stuff, so they medvacd me . .. until I recovered. (S08) I wasn’t seeking any help until I was having some seri ous, serious balance issues. (S02) Receiving Fragmented Care
All participants, both soldiers and their spouses, indicated that they did not have any knowledge about mTBI before the injury. Soldiers reported being subjected to a battery of cog nitive tests and evaluation by multiple specialists before ini tiation of post-mTBI treatment. They also reported being seen by different providers even within a single clinic. Sol diers described feelings of frustration about reiterating the details of their medical histories to one provider after another. Navigating the Health Care System: Hard to Find Care
A majority of soldiers (8/9) indicated that they had to navi gate through multiple appointments with various specialists with minimal guidance. They reported extreme stress about coordinating all aspects of care, from making appointments to requesting referrals for specialty clinics. Soldiers often described their frustrations in terms like these: For me, it was kind of upsetting. I thought I was coming here one time to talk to somebody, and I’d be good. And then it’s, I go to the one appointment and it’s like you need to do this, and you got to do this for the next 5 weeks, and you need to come here and do therapy for this for whatever. And I talk to somebody else and they're like, we need you to set up this therapy to talk to this person. So for me, it’s draining. I’m not used to being at a hospital every day or every couple days doing some therapy or something. (S08)
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Sharing the Responsibility of Care All soldiers and spouses stated that responsibility for the soldier’s post-mTBI recovery should be shared among pro viders, soldiers, and their families. Participants indicated this shared responsibility should include increasing the soldier’s awareness of the injury through provider-initiated education, willingness to acquire knowledge about mTBI symptoms and treatment by soldiers and their spouses, and providing an appropriate recovery/rehabilitation plan in collaboration with patients. A majority of soldiers (8/9) believed the best out come following mTBI could be achieved by including their spouses in their rehabilitation plan at all levels. Acquiring Knowledge About mTBI
A majority of spouses (7/9) reported not knowing how to help their soldier and felt excluded from the soldier’s rehabilitation plan. All spouses indicated that they had no knowledge of mTBI until their soldiers were diagnosed with it. They described the feeling of being left in the dark regarding impor tant details of the soldier’s rehabilitation plan. The majority of spouses (7/9) stated that they resorted to self-education through online sources or secondhand information from their soldiers. Theses spouses reported that the latter was not ideal because the soldiers were often not forthcoming about their recovery progress. A majority of soldiers (7/9) indicated that they were reluctant to share their recovery progress because they did not want to burden their spouses. All participants reported that the predeployment education offered on mTBI did not help them because they did not pay much attention to it at the time. One spouse described the challenges she faced in attempting to help her soldier husband: He doesn’t share, because he doesn’t want to worry me. The only time [he shares] is when he’s in pain or some thing’s bothering him. He’ll get quiet and he’ll get dis tant. Or if his eyes are bothering him, you’ll find him wearing his sunglasses inside the house __ So I just give him his space and let him have his time until he feels better. He doesn’t just say, “Hey, I’m having a bad day. Leave me alone.” It’s [that] you have to read between the lines sometimes and figure out what’s going on. I just come to accept [that] and he tells what he can. That’s how we do it. (SP3) Working Together for Recovery
All participants expressed satisfaction with the TBI specialty care. They described feeling relieved to have been assigned a nurse case manager who coordinated all aspects of their reha bilitation. This decreased their stress about navigating the health care system and helped them to keep track of the soldiers appointments. Almost all (7/9) soldiers indicated that having a provider who was willing to listen to them and acknowledge their concerns motivated them to recover and adjust to postinjury changes.
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DISCUSSION As noted above, the overarching theme for soldiers’ rehabil itation process following mTBI was chasing the care. Both soldiers and spouses described their recovery/rehabilitation process as being aware of the injury, seeking care, acquiring knowledge about mTBI, and finally working together for recovery. The challenges and difficulties they described dur ing this period included proving the injury existed, conflicts with providers, lack of empathy from providers, receiving delayed and fragmented care, and navigating the military health care system. The management strategies they used included acquiring knowledge about mTBI and collaborating with health care providers. A majority of soldiers (7/9) indi cated that they had to advocate for their post-mTBI care. Soldiers appeared to receive delayed screening for mTBI because of fragmented care and high provider turnover. Lack of awareness postinjury appears to have a significant impact on soldiers’ likelihood of receiving timely interventions. All participants (both soldiers and spouses) had difficulty recog nizing mTBI symptoms, and stated that they attributed these symptoms to the general stress of deployment or to the expe rience of combat, rather than to the injury. A majority of soldiers (8/9) did not seek timely health care either for post-mTBI symptom management or rehabilitation. The reasons for the delay in seeking care varied from not recognizing that the changes were related to mTBI (attribut ing them instead to aftereffects of deployment) to thinking the symptoms were not serious enough to seek care and attempting to self-manage them. A majority of soldiers (7/9) stated that they sought care for their post-mTBI symptoms only at the urging of their spouses or were motivated to seek care because they simply could not manage the symptoms on their own. Perhaps the biggest contribution of this study is filling gaps within the existing mTBI literature on rehabilitation. For example, existing literature suggests that behavioral health care (e.g., counseling) is considered stigmatizing among ser vice members and keeps them from seeking the treatment they need.18'27 However, findings from this study suggest that the biggest barriers to the soldier’s care are the perceived lack of empathy from providers and inconsistency of care due to pro vider turnover. Only 1 soldier reported concerns about possible adverse effects on his career while receiving post-mTBI and mental health care. Meanwhile, the remaining 8 soldiers indi cated they were not as concerned about stigma as they were with the negative effect it would have on their marital relation ship if they discontinued the rehabilitation process. These study findings suggest the Army’s efforts to reduce the stigma reportedly associated with psychological health issues have been at least somewhat successful. Existing mTBI literature also suggests that the treatment of mTBI may be influenced by factors unrelated to the injury, such as preexisting psychosocial difficulties (e.g., depression and anxiety) and preinjury coping behaviors.26 Although all of the soldier participants in this study reported no preinjury
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psychosocial difficulties, they did report post-mTBI psycho social difficulties. The majority of participants (8/9) in this study expressed frustration when navigating the military health care system; several of them described this as chasing the care. This is one area where primary providers, nurses, and social workers may make a difference: by acting as care advocates and coordinators of services. Moreover, these find ings support the need for improved mTBI identification and education programs that include early screening, standard ized diagnosis, postinjury symptom recognition, and infor mation about rehabilitation processes in general. A second urgent need is to educate providers on how to interact with soldiers with mTBI to assure them they will be cared for. The findings from this study may lay the foundation for interven tion programs that can assist thousands of service members who are affected by mTBI.
LIMITATIONS AND IMPLICATION FOR FUTURE STUDY This study focused on soldiers recruited from a TBI clinic, where only injured individuals with residual symptoms were seen, thus excluding soldiers who recovered from an mTBI without symptoms or soldiers who were managing their symptoms without intervention by health care providers. Nevertheless, it is clear that some soldiers experience postmTBI symptoms that last beyond 1 year and that these symp toms may contribute to post-mTBI adjustment difficulties.4'27'28 As noted in this study, there is a need for provider education about mTBI and PTSD in service members. This education should ensure that providers are familiar with military cul ture (e.g., rank, military component), unique military cultural norms (e.g., discipline, loyalty, group cohesion and esprit de corps), and awareness of military resources. About 10% of patients with mTBI continue to have chronic symptoms; therefore, they should be evaluated for other medical prob lems to include psychological needs. The findings from this study support the idea that the patient-provider relationship is one of the most important aspects of a successful rehabilita tion plan. As part of the recovery plan, post-mTBI training/ education for patient should include symptoms of mTBI (such as headaches, dizziness, fatigue, irritability, and cogni tive impairment), hyperarousal response, treatment compli ance, and promote family and social support. Future studies should explore the effects of mTBI on the marital relation ship as well as the soldier’s postinjury adjustment.
CONCLUSION Although early diagnosis and treatment are important aspects of successful adjustment after mTBI, the absence of objective findings of impaired function at the time of the injury, the delays with reporting post-mTBI symptoms, the challenges soldiers face when they do report their post-mTBI symptoms, and the perceived difficulty in navigating unfamiliar military health care system make diagnosing and treating mTBI a challenge. Educating military families and providers about
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Post-mTBI Rehabilitation
these challenges is a necessary step toward overcoming the effects of mTBI for the estimated 320,000 soldiers who have returned from war with this injury. ACKNOWLEDGEMENT The authors thank Dr. Charles Vacchiano, Dr. Susan Silva, Dr. Paul Lewis, and LCDR Billy Collins for their support. This study was funded by grant HU000111-1-TS14 (N11-C17) from the TriService Nursing Research Program.
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