The annual incidence of traumatic brain injury (TBI) is approximately 2.8 million in the United States (Taylor, Bell, Breiding, & Xu, 2017). TBI accounts for more than 2.5 million emergency department (ED) visits and results in 282,000 hospitalizations and 56,000 deaths annually (Faul, Xu, Wald, & Coronado, 2010; Taylor et al., 2017). Although adolescents and young adults have the highest rate of ED use for TBI, older adults have the highest rate of hospitalization and mortality, with morbidity and mortality rates of approximately 30% (Faul et al., 2010). The annual rate of TBI–related ED encounters and hospitalizations for adults age 65 and older is on the rise. The rate of ED use across all age groups older than 65 increased, particularly in ages 75 and older, to 787 per 100,000 patients in 2013, a >50% increase compared to 2007. Rates of hospitalization related to TBI also increased, with patients age 75 and older having a 50% increase in 2013 compared to 2007 (Faul et al., 2010; Taylor et al., 2017). An evaluation of readmission rates following hospital discharge after TBI show a positive association with older adults and an increase in 30-, 60-, and 90-day readmission rates for adults older than 65 (Li, Karmarkar, Adhikari, Ottenbacher, & Kuo, 2018). An evaluation of data from the National Study on the Costs and Outcomes of Trauma (NSCOT) examined health care usage in adults ages 55 to 84 who sustained a TBI. As a result, there were greater readmissions, home health care visits, and hours per week of unpaid care, and fewer visits to primary care and mental health providers in older adults ages 75 to 84 compared to patients ages 55 to 74 (Thompson et al., 2012).
Therefore, injured older adults constitute a growing population in neurological trauma care due to the changing demographics in the United States and increased longevity of the population. By 2040, 22% of U.S. residents will be age 65 and older, an increase from 15% in 2014 (Administration on Aging, 2018). This increase in older adults in the United States translates into an increase in traumatic neurological injuries as a result of falls or motor vehicle crashes (MVCs), one of the leading causes of TBI in the older adult population (Faul et al., 2010; Taylor et al., 2017).
Mechanism of TBI and TBI Diagnoses in Older Adults
Falls are the leading cause of TBI in older adults >60 years of age, followed by MVCs (Flaada et al., 2007; LeBlanc, de Guise, Gosselin, & Feyz, 2006; Mosenthal et al., 2004; Taylor et al., 2017). In adults >60 years of age, falls account for 52% to 65% of TBI (Coronado, Thomas, Sattin, & Johnson, 2005; Flaada et al., 2007; Mosenthal et al., 2004; Rapoport & Feinstein, 2001; Taylor et al., 2017) and are usually from ground level (LeBlanc et al., 2006; Taylor et al., 2017). In older adults, the leading TBI diagnoses are subdural hematomas (27% to 46%), traumatic subarachnoid hemorrhage (36% to 38%), and cerebral contusions (4% to 36%) (Coronado et al., 2005; Mosenthal et al., 2002; Ritchie, Cameron, Ugoni, & Kaye, 2000).
Age-related physiological changes make it more difficult to assess or diagnose TBI in older adults. The fragility of bridging veins in an enlarged subdural space in older adults contributes to formation of subdural hematomas even with a low level of impact to the head (Liang, Tsai, Liang, Lee, & Chen, 2002). Older adults on anticoagulation or antiplatelet agents are at greater risk for an acute subdural hematoma even with a normal computerized tomography (CT) scan (Itshayek et al., 2006). Older adults with subdural hematomas may not present with neurological deficits because age-related cortical atrophy and subsequent enlargement of the subdural space accommodates a fluid collection with little mass effect on the adjacent brain. Older adults are more likely to differ in neurological presentation and symptoms, timing of surgical intervention/treatment, and size of subdural hematomas compared to younger patients. Older adults are more likely to have larger subdural hematomas and present with mental status changes compared to younger patients who present with abrupt headaches or emesis, and thus receive earlier neurosurgical intervention (Liang et al., 2002). In addition, TBI, even mild TBI, is a risk factor for development of neurodegenerative and cognitive disorders, such as Parkinson's disease and forms of dementia, and certain alleles (apolipoprotein E gene) have been correlated with increased susceptibility to and severity of brain injury (Bower et al., 2003; Kiraly & Kiraly, 2007; Rasmusson, Brandt, Martin, & Folstein, 1995; Starkstein & Jorge, 2005).
Age, Severity of TBI, and Survivor Outcomes
Outcomes of older adults who sustain a TBI are adversely affected by increased age, increased number of comorbidities, and greater severity of TBI (Coronado et al., 2005; Donohue, Clark, & DeLorenzo, 2007; Flaada et al., 2007; Frankel et al., 2006; Mosenthal et al., 2002; Mosenthal et al., 2004). Among studies, outcomes include in-hospital mortality and cognitive and physical function as measured by the clinician (Glasgow Outcome Scale and the Functional Independence Measure [FIM™]) at acute care hospital discharge, 6 months after hospital discharge, and 1- and 2-year mortality rates (Donohue et al., 2007; LeBlanc et al., 2006; Mosenthal et al., 2002; Ritchie et al., 2000). Few studies evaluate survivor functional recovery beyond acute care discharge (LeBlanc et al., 2006; Mosenthal et al., 2004) and the studies that do are limited by inclusion of patients who only require inpatient rehabilitation (Frankel et al., 2006) and by varying measures of recovery.
In addition to age, severity of TBI influences mortality. Older adults sustain a mild TBI more often than younger adults and sustain a severe TBI less often than younger adults (Flaada et al., 2007; LeBlanc et al., 2006). Several studies demonstrate a linear relationship between severity of TBI and mortality. A positive correlation exists between lower admission Glasgow Coma Score (GCS) (more severe TBI) and poorer outcome and mortality in older adults at hospital discharge (p < 0.001) (Coronado et al., 2005; Ritchie et al., 2000).
Age significantly affects functional recovery while controlling for severity of TBI. Older adults had higher percentages of abnormal FIM scores (greater disability) in expression, locomotion, and feeding compared to younger adults (LeBlanc et al., 2006). Older adults (60 to 99 years old) have lower global FIM (greater disability) scores compared to younger patient groups (18 to 39, 40 to 59; p < 0.001) (LeBlanc et al., 2006).
Patient Perception of Recovery
Little is known about perception of recovery from the TBI survivor's point of view. In studies of psychosocial outcomes and psychological health, there are reports of depression, persistence of symptoms, and difficulty with resumption of social and family activities (Rapoport & Feinstein, 2001; Rapoport, Herrmann et al., 2006; Rapoport, Kiss, & Feinstein, 2006; Rapoport, McCullagh, Streiner, & Feinstein, 2003; Rothweiler, Temkin, & Dikmen, 1998). Evaluation of psychological health after TBI is well documented (Draper, Ponsford, & Schonberger, 2007; Gomez-Hernandez, Max, Kosier, Paradiso, & Robinson, 1997; Wood & Rutterford, 2006), but these studies fail to include adults older than 60, have limited numbers of older adult participants, or do not specify age range. Patients older than 60 reported less psychosocial dysfunction, psychological distress, and physical symptoms compared to younger patients (p < 0.0001, p = 0.005, p = 0.005 respectively; Rapoport & Feinstein, 2001). The results contradict Rothweiler et al. (1998), where significant association existed between increased age and poor psychosocial outcome. Exploring patient perceptions of recovery and persistence of symptoms in TBI survivors older than 50 demonstrated that psychological distress, psychosocial issues, and post-concussive symptoms persisted 1 year following TBI (Rapoport, Herrmann et al., 2006). Few studies measure psychological distress and psychosocial dysfunction in older adult TBI populations and even fewer studies assess these from the patient's perspective.
Although there is substantial research that demonstrates the relationship of age and brain injury severity on functional outcome, little research has explored survivor and caregiver experiences of hospitalization and initial recovery. A scientific gap exists regarding older adults who survive TBI (known as survivors) and caregiver experience of hospitalization and initial recovery process for older adults.
A descriptive qualitative approach and semi-structured interviews (Sandelowski, 2000) were used to gather data from survivors and their primary caregivers after hospitalization following a mild TBI. The current authors obtained approval from the Institutional Review Board before the study commenced.
Setting and Participants
Participants were identified in intensive care units (ICUs), step-down ICUs, EDs, and wards of a single free-standing suburban community hospital, designated as a Level I trauma center. The current study population comprised survivors who were admitted to the hospital with a diagnosis of TBI and their primary caregivers. TBI was confirmed by reviewing the diagnostic imaging, history of present illness, mechanism of injury, and GCS score. A total of 11 participants (five dyads and one individual) were interviewed resulting in 11 separate transcribed interviews. Inclusion criteria required survivor participants (TBI survivors) to be at least 60 years of age or older and required that the caregiver, or family members, be at least 18 years of age. Survivors had to be admitted to an acute care hospital within the last 2 to 6 weeks with a diagnosis of a closed head injury, TBI, subdural hematoma (acute, subacute, or chronic), traumatic subarachnoid hemorrhage, or cerebral contusion and with an admission GCS of 9 to 15 (mild to moderate TBI). Survivor and caregiver participants were also required to have the ability to consent for their health care and research participation. Survivors were excluded if they were younger than 60, had preexisting cognitive impairment, or were incarcerated.
Over a 2-month period, June to August 2010, survivors and their caregivers were identified during the hospital stay or at outpatient follow up with the neurosurgeon. Informed consent was obtained upon hospital discharge or outpatient setting during the first follow-up visit. Data were collected at a one-time semi-structured interview in the outpatient neurosurgery clinic during the first follow-up visit with each survivor and his/her caregiver.
All survivor and caregiver interviews were conducted individually by the same interviewer (L.L.H.). The interviewer was a doctorly prepared advanced practice nurse with experience in qualitative methodology. Interview guides for the survivor participants and spouse, partner, and/or caregiver participants are included in supplementary material (Table A and Table B, available in the online version of this article). Field notes were recorded by the interviewer to describe the interview and participant, particularly nonverbal behavior.
Survivor Interview Guide
Caregiver Interview Guide
All interviews were audio recorded and transcribed verbatim within 3 days. Transcription was reviewed for accuracy with the audio recording, and personal identifiers were removed. Transcripts were uploaded to Atlas.ti 5.2.12. The first two interviews were coded independently by two investigators (L.L.H., J.A.D.) using a systematic protocol to increase the rigor of the analysis (Whittemore, Chase, & Mandle, 2001; Wu, Thompson, Aroian, McQuaid, & Deatrick, 2016). Open coding and constant comparative analysis generated codes that were revised throughout analysis and reformulated into thematic descriptions (Boeije, 2002). In addition, field notes and records of nonverbal information during interviews were reviewed for additional themes. Saturation was obtained when no new thematic data emerged from the interviews (Sandelowski, 1995).
Sixteen survivors and caregivers were approached to participate in the current study, and 11 participants (five survivor/caregiver dyads and one individual survivor) agreed and provided informed consent (Table 1). All survivors were hospitalized with a diagnosis of mild or moderate TBI. Interviews lasted from 30 to 45 minutes. A total of 11 single-spaced transcripts were generated (six to nine pages per interview). No new categories were generated after coding the fifth interview. Consensus was achieved with in-person discussions regarding application of coding categories. Coding verification was used for validation between a primary and secondary coder and was >80% across transcripts.
Survivor and Caregiver Characteristics
Codes and themes from both the survivor and caregiver interviews were combined because they were consistent. Seven themes were evident in the experiences of hospitalization of survivors for TBI and their caregivers (Table 2).
Themes and Definitions for Survivors' and Caregivers' Experiences of Traumatic Brain Injury (TBI)
Road to Recovery Is Uncertain
Caregivers and survivors related accounts of the uncertainty regarding recovery of function. The following narratives capture uncertainty stemming from the injury to present day. Survival and level of functionality were major concerns. One survivor expressed concerns regarding the uncertainty of having to have a craniotomy (for a subdural hematoma), the magnitude of brain surgery, and reflected on this coupled with his/her age:
I think certainly a concern about, you know, what effect it's going to have on me…the surgery was going to have on me, you know, brain surgery…was I going to be in one piece or, you know, I was very concerned about that, but all the, you know, tests and everything I think they checked okay and I could remember to the degree just the main, you know, how old you are and those types of things.
One caregiver spoke about initial concerns about survival:
It's been very scary. When I found him I didn't even think he was alive, and then not knowing and with the head it is always an unknown place, and we didn't know exactly at that point what happened to him, and I think that was…. that the not knowing what was going to happen was what scared the daylights out of me.
Another caregiver explained how procedures could increase uncertainty:
The main one was, is he going to be okay because of the head trauma and then I was concerned about the doctors constantly taking CT scans because…they didn't want any fluid or air going up to his brain because…if it didn't heal right they would have to you know do major surgery on him.
Caregivers explained how health care providers who addressed uncertainty were helpful:
Not at first, but with explanation from the doctors… and then…but because the head…the brain is such an unknown thing and so many things could go wrong and it scared me, but they kind of quieted me and they explained things and they were available, and I think that was the important thing that they were available.
Caregivers and survivors compared function before and after TBI. One caregiver related uncertainty about her husband returning to the man she knew:
I think more is long range, which I knew he was ready to go home, and I knew that's what he wanted to go home, and I knew between his son and myself we could take care of him, but my concern was basically long range, would the man I married be back.
Survivors and Caregivers Experienced Shock, Fear, and Loss of Control
Survivors and caregivers experienced shock, fear, and loss of control. The realization of the abrupt onset of such a serious injury was a serious issue to process and work through for one survivor:
The emotional shock, I think, was having somebody saw into my head…I mean worrying about brain injury. I was just so shocked with the prospect, and then the brain surgery, that I really…kind of wanted to die…I mean I didn't want to go through it…and to wake up I think and just realize I was still in one piece was, you know, just amazing to me.
Survivors related compelling narratives about feeling a loss of control during their hospitalization:
They kept stuffing pills at me and I'd say what is that for and they would tell me and I'd say no I don't want that and it would be an argument…. As soon as I got control of my own input, then I could control my own attitudes towards that.
Caregivers noted feelings of helplessness, anxiety, and loss of control regarding their loved one's injury and hospitalization. The survivor's personality contributed to these reactions:
Well, he is very stubborn and he doesn't like to take pills… maybe because he doesn't know how he is going to react to it, but…that was difficult for me because I knew he was in pain…. That was hard for me to deal with.
Specific symptoms were also a concern, including these about survivor disorientation:
Helplessness in a way, because I couldn't help him and he didn't know what was going on for a couple of days he was out of it. …I mean helplessness, because I know what my husband's like and this wasn't the man that he was.
The survivor's inability to understand what happened and the purposes of restrictive treatment were concerning for one caregiver:
Unable to grant his wishes…aah…he was confined by hands and feet for 3 days and he wanted to be untied. He couldn't comprehend why I couldn't and why somebody else couldn't. Why was he tied? I couldn't get through to him, and I think it frustrated me.
Such interactions sometimes led to conflict and withdrawal by the caregiver:
...then at one point he wanted water and he was not prepared because he had not passed the swallow test, and he would say water, water …and he kept repeating it. There was one point where I had to go home because if I wasn't there he wouldn't ask and he would settle down, but the frustration that I couldn't comply with his wishes.
Physical Limitation on Motion, Control, and Privacy
Survivors and caregivers expressed concerns about the physical limitations that resulted from injuries. Survivors described their concerns about physical limitations during their hospitalization that not only influenced their motion but also their control and privacy:
Not being able to move with numerous braces…. So I could essentially do absolutely nothing for myself and that was very, very frustrating.
Following hospital discharge, survivors voiced their concerns about their mobility once they returned to their homes:
There are limitations of motion and of personal control. I'm still very dependent on my caregivers to help me move to the right places. I have very limited ability to be mobile…. By the time I get up, wake up in the morning, go to the bathroom and get dressed I'm already exhausted and the day has not begun, so the amount of energy it takes to overcome those mobility issues is probably the hardest challenge for me.
Caregivers were also confronted with how to monitor and manage their loved one's physical limitations and enforce health care provider restrictions:
The only difficulty transitioning was his inability to be able to do the things that he wants to do. Stopping him from using power tools I caught him doing that.
Communication Necessary for Decision Making and Planning
Survivors and caregivers discussed the importance of communication, which was focused on timely messaging about important information concerning care, including discussions necessary for decision making and short- and long-term planning. A caregiver recounted a lack of communication that resulted in confusion and panic:
I got a call one day…I had requested that they let me know like 4 days early…and they called me one day at work and said she was ready for…scheduled for dismissal the following Wednesday, which threw me into a panic…and so then they postponed it until the following Saturday, which helped, but… not enough communication with their staff.
Survivors were also confused by lack of communication:
I was upset because they kept changing the heart medicine when I already had what I felt was all right…but they didn't want me to have that and never did explain it to me why I couldn't have it.
Need for Additional Rehabilitation
Survivors and caregivers expressed insight into the need for additional rehabilitative therapies. Survivors conveyed a desire to return home, but also a desire for more rehabilitation:
I was afraid it was too early. I wanted to go home…and that's the main thing. I didn't have enough walking and learning to run my walker…and they had me on machines that wore me out, and I know I needed to do it but it wore me out. I feel if I had walked more it would have helped.
Caregivers conveyed their desire for more rehabilitation:
I think additional rehab would have been good. The worry and concern can only be about recovery and the best route to it, and I think her being at home…and having a third party [physical therapist] there for 2 weeks to assist made a big difference in the first 2 weeks at home, and I think we've made an adjustment in our lives to continue on the current track to recovery of having getting help really from an external source such as the rehab hospital or something of that.
Survivors and Caregivers Recognized the Need for Support
Caregivers expressed their support by feeling a sense of duty and obligation to provide support and care, whether it be moral support or transportation:
We always felt that way, both of us, and I don't know what else to say. There is nothing difficult about it because I am more than willing to do my part to help her, and where she might need professional help, of course that's available and I'll transport her there for rehab, for instance…that's part of the process after such a traumatic experience that we went through and survived, and the survival part is the big thing.
Survivors verbalized their appreciation for their family and social support and their significance in the recovery process:
We did have such tremendous support and we are in a community that just is a tremendous community of support… so we're very fortunate with family and friends, you know, that type of thing to pull me through.
Although survivors acknowledged the importance of their caregivers, they also expressed concern for their well-being and ability to manage the complexities of recovery:
I think it's hard on my husband, you know, I mean he talks like none of this bothered him…believe you me, it did….but he's not going to admit that.
Survivors recognized not only the direct care but also the care coordination was a concern:
He has born the full brunt of all the insurance paperwork for both of us and all of the coordination of all the multiple visits and so forth and that has been a remarkable relief to me not to have to do it, but essentially a full time job for him.
Caregivers expressed their appreciation of people in their lives who provided support during their loved one's injury and hospitalization. Some caregivers reported the importance of professional support:
I think we did pretty good and the nurses - they bent over backwards. When it was time to leave…they'd say, “You can stay, it's quiet, you can stay.” They kinda bent the rules, and I stayed out of their way.
Some caregivers also reported family support:
I can't say that I had a lot of concern because my son was here who is an internist and so, I felt that any momentous decisions he would be able to help us make… besides my son I have a very close friend who was a physician, retired physician.
Finally, support also came from the community:
I think I had a good support system with friends and neighbors.
Information Needed to Understand TBI
Survivors expressed a desire to have additional information about their injury and how the injury affected changes in function. One survivor wanted to know more about TBI:
One of the issues that I had is that….aah…that people at the hospital don't explain to everybody what's wrong with you and I was moved and I had my head injury and they would come and they were going to give me like a CT scan or something and then they would pull me up and that would really hurt.
Survivors also talked about a need to know more about how to function:
Probably getting up and out of bed a little bit more, more training for you as the survivor, in and out of bed, how to get in bed and how to get out of bed by yourself.
Caregivers voiced similar concerns about the need for information in terms of not having enough information about their loved ones' health status, plan, or expectations for normal recovery:
I wasn't real sure I knew exactly what was going on all the time…I wasn't kept real well informed…. I had to ask the questions and finally she had a white board in her room at the end when she was in rehab and I would write notes on there in the evening when I was up there and then somebody would call me the next day, but it was 9 days before I ever saw a doctor or had a doctor in contact with me.
Caregivers also raised overall questions about function:
I'm not sure…it's maybe knowing what to expect or making sure she knows what to expect so she doesn't get frustrated over little things that everybody knows are normal but she doesn't and I'm not sure I do either.
One caregiver summarized her lived experience regarding lack of information about how to integrate TBI experience into daily life:
I think...some of the information with rehabilitation, what do you need to do and why do you need to do it and that type of thing. They seemed to be short on willingness to… give this information to a survivor, and I'm sure there are survivors that probably are numb to all of this and need to do what they are told, but for relatively intelligent people who are well educated and want to be informed, we feel that we were, not myself personally, but with regard to my wife's experience, were left in the dark about how long it will take to do things and why, and you just hear very little about it….Well they have an appointment in 8 weeks, or you have an appointment in 12 weeks, well…so what do we do in the meantime…well you just don't do much.
The current study identified seven interrelated themes: (a) Road to Recovery is Uncertain, (b) Survivors and Caregivers Experienced Shock, Fear, and Loss of Control, (c) Physical Limitation on Motion, Control, and Privacy; (d) Communication Necessary for Decision Making and Planning; (e) Need for Additional Rehabilitation; (f) Survivors and Caregivers Recognized the Need for Support; and (g) Information Needed to Understand TBI. Several key issues from the perspectives of survivors and their caregivers were highlighted. These narratives provide accounts of their insight into the magnitude of TBI, the caregiving aspects of older adult TBI survivors, psychological distress incurred during recovery, and perceptions of the uncertainty of recovery.
An underlying theme is the impact of the sudden brain injury and the uncertainty in hospital course and recovery. Uncertainty in illness and after trauma has been previously described (Mishel, 1981, 1997) with the Uncertainty–in–Illness theory, described as the inability to determine the meaning of illness-related events, occurring when the decision maker is unable to assign definite value to objects or events, or is unable to predict outcomes accurately (Mishel & Bradun, 1988). The uncertainty after TBI and recovery was a source of stress to survivors who questioned whether they would return to their baseline status or feel whole again. The uncertainty of recovery has been explored in persons following stroke (Langhorne, Bernhardt, & Kwakkel, 2011) and in children and young adults after TBI (Gan, Campbell, Gemeinhardt, & McFadden, 2006), more than older adult TBI survivors. The uncertainty of recovery and the possibility of regaining function, personhood, and role within social and family circles remains under explored. The current study illuminates survivor and caregiver perspectives on the experience of injury and uncertainty of recovery. Previous research that explored uncertainty in illness in women with gynecological cancer (Mishel & Sorenson, 1991; Phillips, Montague, & Archer, 2017) revealed that uncertainty was reduced by their confidence in physicians and nurses and through education about symptom patterns, what contributes to symptoms, and understanding consequences of symptoms. These findings can inform future studies and interventions that focus on patient and caregiver education while also reminding providers of their essential role to provide support and knowledge of recovery and discharge preparedness.
In addition to uncertainty of recovery, additional psychological ramifications emerge as themes in the current study, such as shock, fear, and loss of control that further shape survivor and caregiver narratives. The effect of psychological ramifications in pediatric TBI patients is well studied, specifically reintegration in community and scholastic endeavors. Few studies measure psychological distress and psychosocial dysfunction in older adult TBI populations and even fewer studies assess these from survivors' perspectives. The relationship of age to psychological and psychosocial outcomes in older adult TBI survivors is an evolving area of research and to date has had conflicting results (Rapoport & Feinstein, 2001; Rothweiler et al., 1998). Perhaps there is a consensus that older adults report fewer difficulties after TBI because issues such as child rearing and employment tend to pertain to younger populations. However, older adults have their own set of distinct psychosocial issues, including roles as caregiver, volunteer, and maintaining independent living, all of which encompass their unique social context. Nevertheless, both studies agree on the importance of evaluating TBI survivor perceptions of recovery and psychological ramifications following a mild or moderate TBI, where there is currently a gap in the literature.
The current study is one of few describing the lived experience of caregivers and older adult survivors in their own words following hospitalization for mild and moderate TBI. Previous studies capture the association between greater functional recovery and fewer self-reported difficulties mostly based on clinician-rated instruments. The value in the current study lies in the importance in giving a voice to older TBI survivors on the meaning of recovery and ability. This finding should be considered in future study design and reminds researchers that regaining function is a dynamic process involving the interplay of motor, cognitive, and psychosocial function and the survivor's ability to integrate these factors into recovery.
Previous research evaluated the experiences of recovery of adults after physical trauma using interviews (Richmond, Thompson, Deatrick, & Kauder, 2000). Although not specific to older adults, the current qualitative study illuminated key themes of recovery from the survivor perspective, after effects, and moving on, which suggest that recovery is a fluid process unique to each survivor (Richmond et al., 2000). The current authors identified that following the traumatic event, survivors view their lives distinctly as before and after TBI.
The current study indicates that survivors and caregivers felt the need for additional rehabilitation immediately upon hospital discharge. Intensity of rehabilitation services and its impact on functional recovery in older adults after TBI is not well studied. Higher intensity rehabilitation (hours per day) in older adults with TBI was predictive of greater rate of recovery (Shiel et al., 2001) and improved motor function (p < 0.001) at discharge from inpatient rehabilitation (Cifu et al., 2003). The benefits of higher intensity inpatient rehabilitation on functional recovery in TBI patients were confirmed in a randomized controlled trial. A greater number of patients in the high-intensity inpatient rehabilitation program (4 hours daily) reached a maximum FIM total score earlier (at 12 weeks post TBI) compared to those in the control group (2 hours daily; p = 0.015) (Zhu, Poon, Chan, & Chan, 2007). Existing studies that evaluate the intensity of rehabilitation services on functional recovery in TBI patients are limited by the exclusion of adults older than 65.
Intensity of rehabilitation after TBI in adults age 65 and older is affected by insurance coverage because of its influence on access to rehabilitative services. Several studies evaluated the impact of Medicare's Prospective Payment System (PPS) as mandated in 1997 on use of rehabilitative services in a variety of settings (Dobrez, Lo Sasso, & Heinemann, 2004; Lin, Kane, Mehr, Madsen, & Petroski, 2006; McCall, Korb, Petersons, & Moore, 2003; Murray, Love, Dawson, Thomas, & Cebul, 2005; Paddock, Escarce, Hayden, & Buntin, 2007). Intensity of rehabilitation in hours per week decreased in skilled nursing facilities after implementation of the PPS, whereas the number of patients receiving therapy increased (Murray et al., 2005). Prior to PPS in nursing homes, stroke patients were a group that received the highest amount of therapy (hours); however, after PPS, the largest decrease in therapy services was noted in stroke and hip fracture patients (Murray et al., 2005). These changes in intensity of rehabilitation and admission patterns after PPS are not well studied.
Caregiving from the perspective of survivors and caregivers was also a prevalent theme in the current study. Caregiving after stroke has been well documented (Jones, Charlesworth, & Hendra, 2000; McCullagh, Brigstocke, Donaldson, & Kalra, 2005; Rigby, Gibitz, & Phillips, 2009; van den Heuvel, de Whitte, Schuve, Sandevman, & Meyboom-de-Jong, 2001). In addition, caregiver burden and demand, a well explored topic in pediatric TBI populations (Aitken et al., 2009; Qadeer et al., 2017), is not well explored in older adult TBI populations. There is research in caregiver burden in stroke populations, some demonstrating that improved motor function results in less minutes of daily care by the caregiver (Bakas, Austin, Okonkwo, Lewis, & Chadwick, 2002; Bakas et al., 2009; Granger, Cotter, Hamilton, & Fiedler, 1993). Few studies used qualitative methodology, and even fewer studies capture caregivers' perspectives of TBI in older adult survivors alongside their perspective, thus providing a rich narrative from two perspectives.
Findings regarding the need for additional information, resources, and support are substantiated by a recent study that examined perspectives of TBI caregiver perspectives on quality of life (Carlozzi et al., 2015; Kratz, Sander, Brickell, Lange, & Carlozzi, 2017). Using qualitative methodology, Kratz et al. (2017) examined perspectives of caregivers of TBI survivors ages 16 and older. Their study depicts the many concerns of caregivers regarding perceived loss of quality of life, as well as similar concerns to the current study regarding anxiety and stress related to caregiving. The study by Kratz et al. (2017) only captured the perspectives of caregivers, who were primarily parents of TBI survivors who had sustained greater TBI severity (i.e., moderate to severe). The current study differs in evaluating older adult survivors, those with mild and moderate TBI, as older adults are less likely to survive severe TBI and more likely to have mild or moderate TBI. In addition, caregivers in the current study were primarily spouses or partners of the TBI survivor, thus illuminating a different dynamic in caregiving perceptions. An exploration of the experiences of older adult TBI survivors and caregivers would provide insight into distinctive perspectives of injury and recovery that are unique to older adults, especially experiences unlikely to be captured by quantitative measures. Such data could guide more tailored interventions for this population.
An important consideration for nursing practice is the inclusion of other family members, beyond primary caregivers in the design and implementation of interventions and diagnosis-related and discharge education. The impact of caregiving for a loved one following TBI extends to other family members, in addition to those in primary caregiving roles (Aitken et al., 2009; Gan et al., 2006). Most studies exploring caregiving after TBI involved pediatric TBI survivors and showed that the burden of caregiving was often shared responsibility, spread beyond the primary caregiver to include spouses, siblings, and children (Gan et al., 2006). Nursing and social work interventions for older adults should consider the issue of role, specifically how role changes may affect the family in the short and long term.
There is a greater number of hospital admissions and readmissions of older adults with mild and moderate TBI, particularly in patients older than 75. Health care professionals should consider wider implementation of programs to improve nursing care and outcomes to hospitalized older adults, such as geriatric resource nurses to improve education and expertise in gerontological nursing care (Boltz, Capezuti, Shuluk, et al., 2013; Boltz, Capezuti, Wagner, et al., 2013). Health care providers, social workers, and case managers should consider these options when discharge planning—institute education, closer follow up, home visits, and exploring models of transitional care that have been shown to reduce readmission in congestive heart failure patients (Naylor et al., 2004).
The current study has limitations, such as small sample size, which is not uncommon for a qualitative study. A potential limitation is that these data were collected in 2010. Therefore, any changes in the health care system may be evident in contemporary narratives. After conducting a literature review inclusive of the past 10 years, the current authors were struck by how few studies have been published about older adults with TBI and caregivers of older adult TBI survivors. Thus, a gap in the science remains, inspiring the current authors to publish data in hopes to further the topic and initiate much needed conversation in health care, access to post-acute care services, emphasis on patient and family satisfaction, and nursing staff education. The current study was an exploratory study at one institution, and thus some of the experiences and perceptions might relate to institution-specific practice. In addition, the nature of the semi-structured interview has some inherent issues regarding eliciting relevant concerns of the survivor and caregiver. The current study can be used to refine further questionnaires with more detailed questions. Not all the concerns, experiences, or perceptions were adequately elicited based on overarching uncertainty and timing of the questioning, which may have contributed to reluctance during the interviews.
The current study informs the design of future qualitative and quantitative studies in this population by refining interview questions by way of implementation of interventions aimed at improving patient and caregiver education, which has the potential to improve patient outcome and patient and caregiver satisfaction.
The current study is the first study to capture the experiences and perceptions of older adult TBI survivors and their caregivers using semi-structured interviews. The findings illuminate several key themes that are useful in the implementation of analytics and interventions focused on recovery, communication, teaching, patient outcomes, and satisfaction. The data are useful as they provide valuable information in the development and implementation of future larger studies of older adult TBI survivors and their caregivers. Future studies should consider measurement of important variables such as physical limitation, psychological consequences for survivors and their caregivers, the uncertainty of recovery, and how the sum of these affect experience of recovery. Further use of qualitative methodology in studies of older adult TBI survivors could complement the use of clinician-rated, caregiver-rated, and survivor self-report instruments.
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Survivor and Caregiver Characteristics
|Caregiver||Caregiver Age (Years)||Survivor Sex||Survivor Age (Years)||Race||TBI Diagnosis/Mechanism of Injury|
|Partner||61||Male||68||Native American||TSAH, SDH/Fall (ground-level)|
Themes and Definitions for Survivors' and Caregivers' Experiences of Traumatic Brain Injury (TBI)
|Road to Recovery is Uncertain||Survival and level of functionality; extent of recovery and timing is uncertain||Initial concerns about loved one's survival|
|Survivors and Caregivers Experienced Shock, Fear, and Loss of Control||Emotional shock; loss of control during hospitalization||Feelings of helplessness, anxiety, and loss of control regarding their loved one's injury and hospitalization|
|Communication Necessary for Decision Making and Planning||Lack of communication||Timely messaging concerning care, decision making, and short- and long-term planning
Confused by lack of communication|
|Information Needed to Understand TBI||Desire for additional information or teaching about their injury and how injury affects changes in function||Not having enough information about loved ones' health status, plan, or expectations for normal recovery|
|Physical Limitation on Motion, Control, and Privacy||Physical limitations during hospitalization influence mobility, sense of control, and privacy||How to monitor and enforce their loved one's physical limitations and restrictions|
|Need for Additional Rehabilitation||Once home, deepened perspective into benefits of (additional) rehabilitation||Desire for more rehabilitation for their loved one
Intent to make adjustment to continue current track to recovery|
|Survivors and Caregivers Recognized the Need for Support||Appreciation for family and social support and significance in recovery process
Concern for caregiver's well-being and ability and capacity to manage complexities of their recovery||Sense of duty and obligation to provide support and care
Appreciation of persons in their lives who provided support during their loved one's injury and hospitalization|
Survivor Interview Guide
What has this injury and hospitalization been like for you?
What were some feelings you had during your hospitalization?
What were some of the challenges you faced during your hospitalization?
Probe: Any issues regarding medications, pain control, sleep, activity?
What concerns did you have about being discharged from the hospital?
Do you feel you were prepared for discharge from the hospital?
Probe: What would have prepared you more for discharge from the hospital?
What were or are some of the challenges you face now that you are at home?
Probe: Any issues about restrictions, medications, plan of care?
Has it been difficult for you to transition from the hospital to home?
Probe: What aspects of this transition have been difficult?
Looking back, what would have helped you during your hospitalization?
Probe: Do you feel like you understood what was happening to you in the hospital?
What would have helped you in your recovery process?
Probe: Did you understand what was involved in the recovery process?
Caregiver Interview Guide
What has this injury and hospitalization been like for you?
What were some feelings you had during your loved one's hospitalization?
What were some of the challenges you faced during your loved one's hospitalization?
Probe: Any issues regarding medications, pain control, sleep, activity?
What concerns did you have about your loved one being discharged from the hospital?
Do you feel you were prepared for discharge from the hospital?
Probe: What would have prepared you more for your loved one's discharge from the hospital?
What were or are some of the challenges you face now that your loved one is at home?
Probe: Any issues about restrictions, medications, plan of care?
Has it been difficult for your loved one to transition from the hospital to home?
Probe: What aspects of this transition have been difficult?
Looking back, what would have helped you during your loved one's hospitalization?
Probe: Do you feel like you understood what was happening to your loved one in the hospital?
What would have helped you in your loved one's recovery process?
Probe: Did you understand what was involved in the recovery process?