TITLE PAGE
Title: Does age matter? A mixed methods study examining determinants of good recovery and resilience in young and middle-aged adults following moderate-to-severe traumatic brain injury. Running head: Recovery and resilience after TBI
Authors name, degree, and affiliation:
Caroline ARBOUR1, RN, PhD (Assistant professor); Nadia GOSSELIN2, PhD (Associate
professor); Marie-Josée LEVERT1, PhD (Assistant professor); Jérôme GAUVIN-LEPAGE1, RN, PhD (Assistant professor); Bernard MICHALLET3, PhD (Director and full professor); Hélène LEFEBVRE1, RN, PhD (Full professor)
1. Faculty of Nursing, Université de Montréal, Montréal, Québec, Canada 2. Department of Psychology, Université de Montréal, Montr.al, Qu.bec, Canada
3. Department of Speech and Language Therapy, Université du Québec à Trois-Rivières, Trois-Rivières, Québec, Canada
Acknowledgements: We wish to thank Dr Harrison J. Westwick, MD, M.Sc. for reviewing our participants’ brain CT scans at Phase 1. We also wish to thank Dr Marie-Julie Potvin, PhD, for her participation in the telephone assessment of TBI survivors’ outcomes at Phase 2.
Conflicts of Interest:No conflict of interest has been declared by the authors.
Funding: This study was supported by the Canadian Institute of Health Research (CIHR; Operating grant to Nadia Gosselin and a postdoctoral fellowship to C. ARBOUR) and by the Fonds de la Recherche du Québec - Santé (FRQ-S; Salary award to N. GOSSELIN). This study was also supported by a Quebec Rehabilitation Research Network postdoctoral fellowship awarded to C. ARBOUR. For the remaining authors, no sources of funding were declared.
ABSTRACT
Aim: To examine whether age contributes to functional recovery and resilience after moderate-to-severe traumatic brain injury (TBI).
Background: The ability to recover from TBI may change across the lifespan, but the influence of age on TBI outcome is understudied.
Design: Mixed methods study.
Methods: All adults of working-age (18-64 years), discharged alive from a Level 1 trauma center between 2010-2013 after sustaining a moderate-to-severe TBI were considered. Functional recovery was assessed during a telephone interview with the Glasgow Outcome Scale-Extended (GOS-E) 12-36 months post-injury. A subgroup completed the Connor-Davidson Resilience Scale (CD-RISC) and a face-to-face interview about resilience.
Results: Ninety-seven young (27±9 years; 75% male) and 47 middle-aged TBI survivors (53±6 years; 75% male) completed the GOS-E. Eight young and 5 middle-aged adults were also assessed for resilience. Overall, young participants experienced more severe head injuries. Yet, they achieved slightly higher levels of functional recovery (as per GOS-E) compared to middle-aged ones (6±2 vs. 5±2). Controlling for CT scan findings and post-traumatic amnesia duration, age was not found to predict functional recovery in adults of working age. Although both groups showed similar levels of resilience (as per CD-RISC), young participants discussed the
challenges related to “having more time on their hands” and “being a changed person”, two elements that were perceived positively by middle-aged ones.
Conclusion: While age does not appear to affect the potential for functional recovery in adults of working-age, younger TBI could benefit from nursing interventions to strengthen their resilience process related to re-employment orientation and identity.
Summary statement:
Why is this research needed?
Propensity for rehabilitation after traumatic brain injury may change across the lifespan. It is often postulated that increasing age is associated to poorer functional recovery after
brain trauma.
Older trauma survivors could face unique growth and resilience experiences not discussed in current literature.
What are the key findings?
Age does not appear to negatively impact the potential for functional recovery and resiliency after brain trauma in working-age adults (18-64 years).
Increasing age could even facilitate the processes of resilience in middle-aged adults.
How should the findings be used to influence policy/practice/research/education?
There should be no resource allocation discrepancy based on age when planning for rehabilitation after brain trauma.
Rehabilitation nurses should be aware that adapting to the repercussions of brain trauma may not be the same in young and middle-aged individuals.
Given that younger survivors seem to have a harder time adjusting to work and identity loss after brain trauma, intervention research in this area is needed.
INTRODUCTION
A traumatic brain injury (TBI) occurs when an external force is applied to the head causing alterations in brain functions such as decreased consciousness, loss of memory, and/or changes in mental status at the time of injury (Menon et al. 2010). Incidence of moderate-to-severe TBI worldwide is rising, affecting mostly adults of working-age (El-Matbouly et al. 2013, Faul et al. 2010). Relative to young adults, older individuals with TBI have poorer outcomes, even after milder injuries (Marquez de la Plata et al. 2008). The negative influence of age on TBI recovery could begin to appears in individuals 45 years and older (Livingston et al. 2005). Still, these studies did not account for head CT scan findings and duration of post-traumatic amnesia, two of the most robust predictors of TBI outcomes (Walker et al. 2010, Zador et al. 2016). In addition, most TBI outcome studies have focused on the recovery of function during the first year of injury (Leblanc et al. 2006), benefiting younger patients who often require less rehabilitation (Ponsford et al. 2011, Willemse-van Son et al. 2009). Even if recovery after TBI reached a ceiling effect more rapidly with increasing age, research shows that older adults generally experience high levels of psychological adaptation when faced with chronic illness (Roy & Giddings 2012). Unfortunately, this aspect (among others) is almost never addressed in TBI outcome research, contributing to mistaken conclusions about the effect of chronologic age on TBI patient outcomes (Thompson et al. 2006).
Background:
The Glasgow Outcome Scale-Revised (GOS-E) is one of the most commonly used tools to assess TBI patients’ functional recovery (McMillan et al. 2016). Like many other tools, optimal recovery is conceptualized in the GOS-E as the capacity to return to pre-injury levels of independence (Wilson et al. 1998). Resumption of previous activities being the main focus of the GOS-E, it may create a bias in favor of younger brain trauma survivors who are less prone to be
pushed into early retirement compared to older ones. According to the Stress and Coping Model (Lazarus & Folkman 1984), psychological characteristics are also important to predict a person’s ability to recuperate from a difficult situation.Resiliency, in particular, can exert powerful influences on future health and morbidity (Smith & MacKenzie 2006). While there is no
universal definition of resilience (Aburn et al. 2016), it can be regarded as the process of adapting well in the face of adversity, trauma, or any significant sources of stress (American Psychological Association 2014).
In recent years, TBI research has focused on identifying which premorbid characteristics allow some individuals to “beat the odds” by overcoming life-threatening injuries and return to a satisfying life (Holland & Schmidt 2015). TBI patients’ demographic and clinical characteristics including age, lower education, history of substance abuse, and depressive mood have been consistently associated to poorer outcomes (Kreutzer et al. 2016). Regarding psychosocial adjustment, friendships were found extremely important for the promotion of sense of self and relevance in adolescents and young TBI adults (Franulic et al. 2004, Tate & Broe 1999, Wood & Rutterford 2006). On the other hand, research on these processes and how they interfere in middle-aged TBI adults is lacking. Such knowledge is essential to inform future intervention designs addressing the rehabilitation needs of TBI adults with the potential to reintegrate the workforce (MacLeod et al. 2016). This study proposes an integrated summary of predictors (quantitative research) and views (qualitative research) of functional recovery and resilience in adults of working-age recuperating from brain trauma.
THE STUDY Aim
The aim of this study was to examine whether age contributes to functional recovery and resilience in TBI adults of working-age, and if so, in what aspects. Based on available evidence,
we hypothesized that: 1) higher levels of functional recovery would be observed in young TBI adults compared to middle-aged ones; and 2) TBI adults would show distinctive narratives on what contributed to their resilience process depending on whether they are young (between 18-44 years) or middle-aged (between 45-64 years).
Design
This study employed a convergent parallel mixed methods design (Creswell et al. 2003). This design was selected for its ability to preserve the inherit complexity of TBI outcome research, while allowing TBI survivors to voice their perspectives on the topic. In this study, the qualitative data were collected and analysed using a constructivist, Grounded Theory approach (Charmaz 2006).
Participants
All adults of working-age discharged alive from a Level 1 trauma center between 2010-2013 after sustaining a moderate-to-severe TBI were considered for this study. Eligibility criteria included: 1) being between 18-64 years old; 2) having sustained a moderate or severe TBI at least 12 months before study participation; and 3) speaking either English or French. Homeless
individuals and those with major neurological or psychiatric disorders interfering with cognitive functioning were excluded.
Data collection
Functional recovery was assessed during a telephone interview, 12-36 months following hospital admission, as part of the institution follow-up program and quality of care procedures. In the instance where the patient was not able to answer the questions for him/herself, because of death, cognitive deficits, or incarceration, the assessment was performed with the help of the spouse or a close relative. A subgroup of patients was recruited for the resilience assessment
while taking part to a study about sleep quality at the research institution between November 2015 and March 2016.
Measure
Participants’ characteristics
Information about participants’ age and sex were gathered from their medical charts. Those who took part to the resilience assessment provided additional information about their level of education and pre-injury history of substance abuse. For all participants, TBI severity was determined with the Glasgow Coma Scale (GCS: Teasdale & Jennett 1979). Briefly, patients presenting an initial GCS score between 3-8 were considered severe TBI, and those with a GCS score between 9-12 moderate TBI. Patients with an initial GCS of 13 and a positive head CT scan were also considered moderate TBI, based on results from a recent large-scale study (Mena et al. 2011). The head CT scan of each participant gathered within 24h of hospital admission was reviewed by a resident in neurosurgery. Structural abnormalities including midline shift,
compressed cisterns, intracranial hemorrhage, or swelling were documented and used to compute the Marshall classification score, a CT scan derived metric for targeted therapy (Marshall et al. 1992). Any clinical variables with a potential to delay onset of rehabilitation after TBI including duration of post-traumatic amnesia (PTA) and hospital length of stay were documented from participants’ medical chart using a method described previously (Arbour et al. 2016).
Functional recovery
The GOS-E (Wilson et al. 1998) was used to assess participants’ functional recovery. The GOS-E classifies recovery as either: death or vegetative state (scores 1 and 2); lower/upper severe disability (scores 3 and 4); lower/upper moderate disability (score 5 and 6); or lower/upper good recovery (scores 7 and 8). Scores are established based on patient’s level of independence in daily living activities and work/school ability. Briefly, individuals with a score of 1 or 2 have
either succumbed to their injuries or are not responsive to external commands. Those with a score of 3 or 4 have regained consciousness, but may not be left unsupervised for more than 8 hours as they require extensive support. Individuals with a score of 5 or 6 are independent at home, but necessitate help or accommodation outside. Those achieving a score of 7 or 8 are completely independent and are able to reintegrated work or school, even if only part-time.
Resilience
Participants who took part to the resilience assessment also completed the Connor-Davidson Resilience Scale (CD-RISC: Connor & Connor-Davidson 2003). The CD-RISC is a 25-item questionnaire validated across adulthood (Connor & Davidson 2003, Lamond et al. 2008). It includes statements such as “I am in control of my life”, “I tend to bounce back after illness or hardship”, and “I am able to adapt to change”. Responses are rated on a 5-item Likert scale (from not true at all to true nearly all the time) and total scores range from 0 to 100, with higher scores reflecting greater resilience. Considering that depression may interfere with the process of
resilience (Toukhsati et al. 2016), depressive symptoms were assessed using the second edition of the Beck Depression Inventory scale (BDI-II: Beck et al. 1961). The BDI-II contains 21 items listing symptoms of major depressive disorder including depressed mood and cognitive
symptoms such as hopelessness, suicidal ideation, sleep disturbance, reduced appetite, and poor libido. The CD-RISC and BDI-II were completed prior to the interview. All participants were given the option of reading and filling in the questionnaires themselves or having the
experimenter read out the questionnaires and record responses for them.
Following questionnaires, in-depth face-to-face interviews about resilience were
conducted by the principal investigator (CA). All interviews were performed in the same office and lasted between 21-44 minutes depending on TBI participants. In accordance with the Grounded Theory approach, data collection and analysis occurred simultaneously during this
phase of the study. Narratives were transcribed and analyzed by coding and compared back and forth between participants, as well as with questionnaires and field notes.
Pre-testing of the semi-structured interview guide
Prior to study initiation, a semi-structured interview guide addressing the experience of resilience was elaborated by the principal investigator (CA) in consultation with two experts in the field of TBI resilience (MJL, HL) (see Figure 1). The guide was pre-tested in three non-brain injured individuals (2 males, 25±2 years) who lived through major traumatic experiences
including childhood sexual abuse, parental reject because of sexual orientation, and psychological harassment at work. These subjects were recruited through referrals and pre-testing was done by a trained neuropsychologist in case the need for counselling had arisen.
Ethical considerations
Authorization to use GOS-E scores gathered in the last 3 years during a follow-up clinical program for research was obtained (protocol: 2011-543). The Research Ethics Board of the institution also approved the conduction of semi-structured interview about resilience (protocol: 2011-690). Written informed consent was obtained from all participants who took part to the resilience assessment. To preserve anonymity, digital recordings and written transcripts of interviews were assigned alpha-numeric codes. Participants’ name was not mentioned during recording of the interviews.
Data analysis
Descriptive statistics (i.e. mean and SD or frequency and percentages) were computed for all quantitative data. Participants between 18-44 years were considered young, whereas those between 45-64 years were considered middle-aged (Livingston et al. 2005). Both groups were compared in terms of demographic, clinical, and head CT scan characteristics, as well as performance on the GOS-E using either student t, chi square or Mann Whitney U tests. To
explore the ability of age to predict TBI participants’ functional recovery (as per GOS-E
established categories), an ordinal regression analysis correcting for time elapsed since injury and head CT scan findings was conducted. As duration of PTA is recognized as the most robust predictor of TBI outcome, it was also integrated in the regression analysis (Zafonte et al. 1997). A Pearson correlation between participants’ levels of psychological resilience (as per CD-RISC) and depressive symptoms (as per BDI-II) was computed. Analyses were performed with SPSS 24.0 (SPSS Inc., Chicago, IL) and statistical significance was set at p<0.05.
TBI participants’ narratives about resilience were transcribed by the principal investigator (CA) and analyzed using the three coding steps of constructivist Grounded Theory from Charmaz (2006). These steps can be summarized as:
Step 1- initial coding: Consisted in a line-by-line analysis of words, segments and participants’ own terms.
Step 2 – focused coding: Involved synthesizing initial codes into conceptual categories. Step 3 – theoretical coding: Was done by constantly comparing data between participants
and from other sources. As conceptual categories emerged during the interviews, two questions were added to the interview guide for clarification under the advice of resilience experts (MJL, HL). The questions were: “In what aspects do you consider yourself different from prior your TBI? ” “How do you explain that several trauma survivors feel closer to their loved ones and families after the injury?” Theoretical sampling continued until data saturation was reached, which happened after having interviewed 8 young and 5 middle-aged TBI adults (Tuckett 2004).
Rigor
This study gathered rich and complementary data through various sources including medical charts, head CT scans, questionnaires, interviews, and detailed field notes. Constant comparison between data from various sources ensured the contextual sensitivity of the study by helping the identification of persistent patterns and differences within and across interviews (Cooney 2011). Credibility was achieved with the consultation of two TBI resilience experts (MJL, HL) for the elaboration and modification of the interview guide. Credibility was further strengthened by cross-checking the formulated categories with five TBI participants (3 young and 2 middle-aged) who agreed to be contacted after the interview (Beck 1993). Consistent with the notion of auditability in Grounded Theory, direct quotes are provided to illustrate and build upon findings derived from quantitative measures (Cooney 2011).
RESULTS
A total of N=144 TBI adults (97 young and 47 middle-aged) completed the GOS-E in the last 3 years during the follow-up clinical program (Table 1). Among them, 13 TBI survivors (8 young and 5 middle-aged) were assessed for resilience (Table 2). Both samples were composed mostly of men (75%) who sustained a severe TBI in the last 12-36 months (19±4 months on average). Etiology of TBI included passenger in a motor vehicle collision, fall, hit or run over by a motor vehicle, or assault.
Despite showing similar GCS score upon hospital admission and injuries on head CT scans, young individuals were diagnosed more frequently as severe TBI compared to middle-aged individuals (66 vs. 49%, p<0.05). Still, young TBI obtained significant higher scores on the GOS-E in the months following the injury compared to middle-aged TBI, suggesting a propensity for better functional recovery. Nonetheless, age was not found to be a significant predictor of functional recovery (as per GOS-E classification) after moderate-to-severe TBI (Table 3) in
regression analyses when we controlled for TBI severity and delay since TBI. Among all other predictors tested, duration of PTA was the only one to significantly predict participants’ GOS-E recovery category (Table 3). The test for parallel lines assumption was non-significant
(2=13.834, df=16, p=.465), suggesting that the odds of poorer functional recovery with increasing PTA was the same across GOS-E category (Tabachnick & Fidell 2007).
At a descriptive level, younger individuals who took part to the resilience assessment tended to score lower on the CD-RISC and higher on the BDI-II scale compared to middle-aged individuals (Table 2). A strong negative correlation between CD-RISC and BDI-II scores was also observed (r=-0.78, p<0.001) where participants reporting better resilience were those with lower depression symptoms. Regarding participants’ experiences of resilience, a total of eight conceptual categories was brought up during the interviews. More specifically, participants of both age groups shared narratives related to: “attributing a meaning to the TBI”, “creating a new support system”, “redefining roles and responsibilities”, “learning to live with chronic deficits”, “finding comfort in comparison”, “adjusting to having time on their hands”, and “realizing their own resilience potential”. Young TBI participants also had narratives related to the conceptual category of “adapting to being a changed person”, whereas this was not discussed by middle-aged ones. As only one participant did the interview in English, narratives have been freely translated from French by the principal investigator (CA).
Attributing a meaning to the TBI
Attributing a meaning to the TBI was mentioned by 5 young and 4 middle-aged participants. Most often, the TBI was seen as the direct consequence of past, often neglectful, behaviors.
“I deserved my accident. I am not happy it happened, but I definitely deserved it for all the things
I did before. Let’s just say I was not an angel.” (Young TBI-02)
“Looking back I realize that at that point in my life (referring to before the TBI), anything could
have happened to me. I was on the edge of alcoholism… often driving under the influence. […] God wanted to put an end to it.” (Middle-aged TBI-03)
Creating a new support system
Creating a supporting and nurturing environment was identified by all participants as something crucial to their recovery. For several of them, the TBI was the reason for their newfound appreciation for their families and/or an opportunity to rekindle relationships with them. For others, living through a TBI had shed light on the flaws that were present in some of their relationships and the opportunity to let them go, reinforcing the notion that resilience is more of a process than a trait.
“I owe a lot to my sister and her husband. We were not close before my TBI. I barely knew the
guy to be honest. Without their presence and their support, I don’t know how I would have made it.” (Middle-aged TBI-02)
“Having a TBI made me realize that my boyfriend was not there for me the way I wanted him to
be. I do not need that in my life. I now know what I need and what I don’t.” (Young TBI-06) Redefining roles and responsibilities
Along the way to recovery, another marking point was the obligation for TBI survivors to redefine their roles and responsibilities within their family unit. Although this was perceived as a way to maintain a healthy family functioning by 1 young participant, most participants mentioned that these changes in family structure had greatly affected their self-esteem.
“Before the accident, my girlfriend was pregnant with our first child. Now, we have two children.
[…] Since my TBI, I can no longer work. My girlfriend went back to work, and I am a stay-at-home dad. It works for us.” (Young TBI-05)
“Having a TBI changed everything in my family as they now pay more attention to me. I mean,
they look after me a lot. […] Like when I was a little child. This has affected my confidence. I don’t have it anymore.” (Young TBI-08)
“I find it hard that I have to live with my son now. He says that it’s no big deal, but it’s difficult
not being the father or the grand-father I would like to be.” (Middle-aged TBI-04) Learning to live with chronic deficits
For 4 young and 3 middle-aged TBI survivors, recovery meant findings ways to cope and maintain functioning in spite of cognitive deficits.
“Since my accident, I often lose my train of thought […] every 3-4 sentences. I force myself to be
more attentive and I realize it helps me recuperate my thoughts.” (Young TBI-01)
“I have a hard time remembering people’s name now. I learned to use images to help me create a
mental picture of the person’s name.” (Middle-aged TBI-01) Finding comfort in comparison
Although all participants reported having to live with multiple disabilities, most of them perceived they had a successful recovery based on what it could have been.
“I see people in wheelchairs and I tell myself it could have been me.” (Young TBI-07)
“There was a guy in rehab, he was at an advanced stage of a degenerative disease. He wanted to
go home, but it was just not possible. […] It made me realize how lucky I was to have the opportunity to go home.” (Middle-aged TBI-02)
The notion of having time on their hands because of un-employability was perceived differently by young and middle-aged adults. Whereas the majority of young participants mentioned that not having an occupation was dull and lonely, all middle-aged participants mentioned that not working allowed them to spent more time with family and/or friends, which was considered positively.
“I no longer work […] I cannot stay at home doing nothing. I want to keep busy, but everyone is
working. When I am alone, I take a car ride or go swimming. You know, just to stop thinking.”
(Young TBI-02)
“I am closer to my children and grand-children now. I am available. Being a truck driver, I used
to be gone for long stretches of time […]. It had an impact on my relationship with my kids. They were more distant.” (Middle-aged TBI-04)
Realizing their own resiliency potential
Recovering from a moderate or severe TBI allowed several TBI participants to realize their resilience potential.
“I am a hell of a fighter. All the therapists at the rehab center told me. I want to keep impressing
them. They won’t believe their eyes.” (Young TBI-04)
“I am not vulnerable. I lived through a life-threatening injury and I would have killed to stay
alive.” (Middle-aged TBI-01)
Adapting to being a changed person
Most young participants mentioned they had to adapt to their new self. This was not brought up in the middle-aged group. This consequence of TBI, although positive at the end, could be overwhelming at some time.
“I was a certain person before […] after the accident, everything changed. That’s scary. For
sure I would like my body to be the same as before, but with time, I realize that my state of mind and personality are much better now.” (Young TBI-02)
DISCUSSION
To our knowledge, this study is the first to provide an integrated view of functional recovery and psychological resilience in TBI adults of working age. This study builds up on emerging evidence (Livingston et al. 2005) showing that despite sustaining milder injuries, middle-aged TBI survivors generally experience poorer functional recovery than young ones based on GOS-E classification. Still, middle-aged participants showed similar levels of psychological resilience than younger participants. In fact, our results show that the iterative process of TBI recovery is very similar in middle-aged and young adults. Thus, there could be a whole range of positive outcomes in middle-aged brain trauma survivors that are not currently being grasped by conventional recovery screening tools. Young adults conversely appear to have difficulties adapting to employment and identity loss in the months following TBI, opening new avenues for nursing intervention research.
As highlighted previously (LeBlanc et al. 2006, Marquez de la Plata et al. 2008), and despite experiencing milder head injuries, middle-aged individuals showed lower levels of functional recovery and were less incline to have reintegrated work and/or school than young TBI survivors. While older TBI adults may truly have poorer recovery potential than younger ones, they are also more likely to be pushed into early retirement (Schulz-Heik et al. 2016) and to score <7 on the GOS-E for that particular reason. Nonetheless, age was not found to be a significant predictor of functional recovery in adults of working age. Duration of post-traumatic amnesia on the other hand, was found an independent predictor of GOS-E recovery category following TBI. Although age was not found useful to predict long-term functional outcomes in the present study,
it is a consistent predictor of TBI short-term recovery and mortality (Mosenthal et al. 2002, Raj
et al. 2014).
The general held belief that the older a person gets, the frailer she/he becomes was not supported by our findings. In fact, our results support emerging evidence showing that older TBI adults have the same propensity for resilience than younger ones (Diehl & Hay 2010, Nygren et
al. 2005). Even in late life (85 years and older), most individuals report rich and fulfilling
resilience experiences despite declining health (Felten 2000, Hardy et al. 2004, Hinck 2004, Lamond et al. 2008, Montross et al. 2006, Nygren et al. 2005, Wells 2010), but this aspect remains to be investigated in TBI adults 65 years and older. Our results show that the conception of resiliency among TBI adult of working age generally entails: “attributing a meaning to the TBI”, “creating a new support system”, “redefining roles and responsibilities”, “learning to live with chronic deficits”, “finding comfort in comparison”, and “realizing their own resilience capacity”. In comparison, in young non-brain injured adults with a chronic illness, resiliency may take the form of emotional stability, social maturity, and showing initiatives at work and/or school (Crump et al. 2016). Resiliency in non-brain injured older adults generally encompass living in the present, looking at the bright side of life, feeling the same despite changes in appearance, and feeling competent even when needing help (Nygren et al. 2007).
The only difference found between young and middle-aged TBI survivors was in the way they “dealt with having more time on their hands” as a result of un-employment. We
hypothesized that this aspect was perceived positively by middle-aged adults as retirement (even if forced) was in line with their developmental trajectory and allowed them to spent more time with their loved ones. On the other hand, un-employment was a source of isolation for young TBI adults, affecting their capacity to maintain a social network outside of the family unit. The notion of “adjusting to being a changed person” was also brought up by young TBI participants. This
phenomenon could also be described in terms of experiencing: “mind/body disconnect”,
“disconnect with pre-injury identity”, and “reconstruction of self-identity or personhood”, based on a meta-synthesis of 23 TBI qualitative studies (Levack et al. 2010). In both age groups, better mental health status (as per low BDI-II scores) was strongly associated with higher resilience levels, and several recent studies of older adults support this relationship (Lamond, 2009; Lee et
al. 2008, Mehta et al. 2007, Yoon & Lee 2007).
This study was not without limitations. First, although we found distinctness in dealing with un-employment between young and middle-aged TBI adults, interviews were performed at only one point. Therefore, a ‘honeymoon’ phase can be expected during the first months of forced retirement in middle-aged adults, and may have interfered with our results (Klonoff et al. 2014). A longitudinal cohort study design could definitely have expanded our understanding of the conceptual category “adapting to having time on their hands” expressed by our TBI
participants. Second, as TBI patients with major psychiatric disorders were not considered for inclusion, our findings may not apply to those with poor mental health. Last, this study was conducted in community-dwelling Caucasian TBI adults, limiting the generalization to other settings, diagnosis and cultural groups. Still, important insights can be drawn from the findings with regard to nursing care addressed to TBI adults in both early and late rehabilitation.
CONCLUSIONS
This study strongly suggests there is a lack of consideration for patient-focused outcomes in TBI recovery screening tools. Older survivors of moderate-to-severe TBI in particular could face unique growth opportunities not taken into account in TBI literature. While screening TBI adults for resilience levels may help identify those at risk for adapting poorly when exposed to stressors, further research is needed to determine if nursing interventions can effectively build resilience in young TBI adults with difficulties adapting to employment and identity loss.
ACKNOWLEDGEMENT
We wish to thank Dr Harrison J. Westwick, MD, M.Sc. for reviewing our participants’ head CT scans. We also wish to thank Dr Marie-Julie Potvin, PhD, for her participation in the telephone assessment of TBI survivors’ functional recovery.
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Table 1 Characteristics, CT scan findings, and functional recovery of young and middle-aged TBI individuals Variables % or mean (SD) N=144 Young n=97 Middle-agedn=47 t, U or X 2 test Demographic characteristics Gender (Male)
Age at TBI onset
Time elapsed since TBI (months)
TBI severity Moderate Severe Clinical characteristics Initial GCS score (3-13) PTA (days)
Hospital stay (days)
Head CT scan findings
Marshall classification score (1-6) Midline shift
Compressed cisterns SDH
SAH Swelling
Functional recovery (>12 month post-TBI) GOS-E total score (1-8)
Death
Vegetative state
Lower/upper severe disabilities Lower/upper moderate disabilities Lower/upper good recovery
75% 279 195 34% 66% 8±3 17±21 20±13 3±1 10% 21% 47% 45% 52% 6±2 1% 4% 13% 51% 31% 77% 536 213 51% 49% 9±2 23±26 24±20 3±1 18% 16% 56% 58% 42% 5±2 2% 11% 19% 45% 23% ns p<0.001 ns ns p<0.05 ns ns ns ns ns ns ns ns ns p<0.05 ns ns ns ns ns
t=t-test; U=Mann-Whitney U test; X2=Chi square test; GCS: Glasgow Coma Scale; PTA=Post-traumatic amnesia;
SDH=Subdural hemorrhage; SAH=Subarachnoid hemorrhage; GOS-E=Glasgow Outcome Scale-Extended Note: ns=non significant
Table 2 Characteristics of young and middle-aged TBI involved in the resilience assessment Variables % or mean (SD) N=13 Young n=8 Middle-aged n=5 Demographic characteristics Gender (Male)
Age at TBI onset Education (years)
History of substance abuse Time elapsed since TBI (months)
TBI severity Moderate Severe Clinical characteristics Initial GCS score (3-13) PTA (days)
Hospital stay (days)
Functional recovery (>12 month post-TBI) GOS-E total score (1-8)
Level of resilience CD-RISC score (0-100) Depressive mood BDI-II score (0-63) 75% 205 195 25% 18±4 38% 62% 8±3 18±17 20±6 6±1 70±15 11±10 80% 572 213 20% 20±4 40% 60% 10±3 14±3 16±4 5±1 80±4 7±5
t=t-test; U=Mann-Whitney U test; X2=Chi square test; GCS: Glasgow Coma Scale; PTA=Post-traumatic amnesia;
GOS-E=Glasgow Outcome Scale-Extended; RISC=Connor-Davidson Resilience Scale; BDI-II=Beck Depression Inventory-II
Table 3 Ordinal regression analysis of GOS-E scoring category propensity, considering age and other factors as predictors
95% Confidence interval
Variables Levels Estimate SE Wald df Sig. Lower
bound
Upper bound GOS-E category
Death/vegetative state -4.313 .948 20.722 1 .000 -6.171 -2.456
Lower/upper severe disabilities -2.267 .821 7.615 1 .006 -3.877 -.657
Lower/upper moderate disabilities .254 .796 .102 1 .749 -1.305 1.813
Lower/upper good recovery 4.581 1.262 13.172 1 .000 2.107 7.056
Predictors
Age (years) .003 .012 0.44 1 .833 -.021 .026
PTA (days)
Months since TBI
-.056 .021 .009 .040 38.332 .287 1 1 .000 .592 -.074 -.057 -.039 .099 Midline shift No Yes .617 .518 1.416 1 0 .234 -.399 1.632 Compressed cisterns No Yes -.189 .454 .173 1 0 .677 -1.079 .701 SDH No Yes .026 .353 .005 1 0 .941 -.666 .718 SAH No Yes .098 .350 .079 10 .779 -.588 .785 Swelling No Yes -.427 .366 1.360 1 0 .244 -1.144 .291
SE=Standard error; df=Degree of freedom; Sig=Significance; GOS-E=Glasgow Outcome Scale-Extended; PTA=Post-traumatic amnesia; SDH=Subdural hemorrhage; SAH=Subarachnoid hemorrhage
Instructions for participants
The goal of this interview is for TBI survivors like yourself to voice their opinions and perceptions about their experience adapting to life after TBI and potentially identify elements that have helped them “bounce back” from such a significant life-experience. Open-ended questions to be asked by the interviewer
1. Tell me how your TBI happened?
2. How have you recovered since your injury? 3. In what aspects your TBI has changed your life?
4. How were you able to face and maybe even overcome the challenges caused by your TBI?
5. Can you give a meaning to what has happened to you? 6. What has your TBI brought you?
7. What did you learn about yourself during the recovery process? Figure 1 Semi-structured interview guide.
