The relationship between loss of self-identity and depression in victims who sustained a traumatic brain injury
Introduction and Literature Review
A traumatic brain injury (TBI) is an injury to the brain that is often associated with impairments on a cognitive, behavioral and psychological level for affected individuals. Around 3.5 million individuals in the U.S. sustain a traumatic brain injury each year (Coronado et al., 2012). Those affected by TBI in the U.S suffer significant rates of mortality and disability (Goverover & Chiaravalloti, 2014). The disabilities caused by trauma to the brain depend on several factors, such as the severity of the injury, the location of the injury, as well as the age and health of the patient (National Institute of Neurological Disorders and Stroke, 2013).
TBI is probably one of the most profound life events that an individual can experience, resulting in many changes across all aspects of life for the affected individual. Common disabilities associated with TBI are cognitive impairments (difficulty with thinking, memory and reasoning), sensory processing (impairments with seeing, hearing, tasting touching and smelling), communication (trouble with expression and understanding), and mental health or behavior problems (anxiety, depression, personality changes, aggression, acting out and inappropriate behavior) (National Institute of Neurological Disorders and Stroke, 2013). These acquired disabilities after the TBI can critically affect individuals’ satisfaction with life, especially for those suffering with pervasive cognitive and behavioral changes (Juengst et al., 2015).
Life satisfaction, also referred to as quality of life (Degeneffe & Lee, 2010) has shown to be intimately connected to depression, where higher levels of depressive symptoms correlate with negative reports of quality of life, memory and satisfaction with life (Goverover & Chiaravalloti, 2014). Quality of life has many definitions, and according to the World Health Organization (WHO), it is “an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns” (Billington, 1999, p.3). The term health-related quality of life (HRQOL), however, encompasses a more specific subset of life quality (which has received major attention in medicine and health fields) where a common measurement, the SF-36, measures physical functioning, social functioning, role limitations due to physical problems, fatigue, pain, general health perception and perception of health over the past year (Degeneffe & Lee, 2010). In this paper, quality of life will be referred to as health-related quality of life for victims with TBI. Greater quality of life is associated with higher life satisfaction, higher life satisfaction is associated with less depressive symptoms, and lower life satisfaction is most often associated with greater depressive symptoms (Juengst et al., 2015).
Previous research has explored associations between quality of life and the effect that a shift in personal life roles have on victims with TBI. Recognition of losses, such as loss of life roles (worker, friend, parent, hobbyist, etc.) after traumatic brain injury (Tasker, 2003) can make a person feel that the life they previously lived has been lost, thus creating a sense of lost identity (Haynes, 1994). Identity can be defined as the active and dynamic understanding of self, and are derived from the interactions between people and the environment (Simon, 2004). There are many components that make up a person’s self-identity, and in line with the Social Identity Theory, individuals construct their sense of self through social relationships (Freeman, Adams, & Ashworth, 2014). Therefore, in this paper, loss of self-identity will largely refer to the loss of social identity in victims after sustaining a traumatic brain injury, as well as the loss in life roles such as hobbyist, home maintainer, friend, leisure activities participant, parent, religious participant, sibling, volunteer, etc.
Depression and Life Satisfaction/Quality of Life
Many previous studies done on victims sustaining traumatic brain injury demonstrate the prevalence of depression. According to Bombardier et al., (2010), there was a prevalence of new on-set depression for 49% of victims who had suffered a TBI. Depression can cause further cerebral damage and even slow the recovery process in victims with TBI (Perna, Rouselle, & Brennan, 2003). Bryant et al., (2010) found that major depression and generalized anxiety disorder were the two most frequently diagnosed psychiatric conditions following TBI. Furthermore, the prevalence of depression after traumatic brain injury often leads to determent of functional outcomes and community integration (Hart et al., 2011).
In one study, the adult siblings of victims sustaining TBI wrote out responses to the question, “What is your feeling regarding your sibling’s quality of life” and using comparative text analysis, the researchers found high reports of depression among their siblings with TBI (Degeneffe & Lee, 2010). It was important for the brothers and sisters to assess their siblings’ quality of life, because the often intimate, lifelong bonds between siblings make the observations of their affected siblings valid. Furthermore, depression has shown to negatively impact the accuracy of self-reports in victims with TBI, due to impacted self-awareness following TBI (Goverover & Chiaravalloti, 2014). Individuals who are more aware of their disabilities tend to have higher rates of depressive symptoms than the individuals who are not aware (Malec, et al., 2007).
Life satisfaction refers to an individual’s cognitive assessment of his or her own overall life and is intimately connected to depression. According to Perrone & Civiletto (2004), life satisfaction is “…a global feeling of contentment, fulfillment or happiness with life in general.” Individuals afflicted by moderate to severe traumatic brain injuries tend to report low levels of life satisfaction immediately after the injury (Cicerone & Azulay, 2007; Williamson et al., 2013) as well as over time (Grauwmeijer, Heijenbrok-Kal, & Ribbers, 2014; Resch et al., 2009). Research supports the notion that life satisfaction is connected to the satisfaction of life roles that an individual holds (Hughes and Galinsky, 1994).
Depression in victims who had suffered TBI was significantly associated with self-reports of quality of life, showing that the greater the depression, the lower the quality of life and life satisfaction (Goverover & Chiaravalloti, 2014). The study examined the relationship between self-awareness and depressive symptoms through self-reports of memory, quality of life and life satisfaction in victims with TBI. The Awareness Questionnaire, Health Status Questionnaire, SWLS and Memory Function Questionnaire were the measures used. It was found that while lesser symptoms of depression were associated with greater quality of life and life satisfaction, the pattern also indicated that these individuals had greater difficulty with self-awareness.
A study done by Azouvi et al. (2016) found that quality of life was the only factor out of the different factors they had measured (such as disability) that was directly related to psycho-cognitive factors for the 147 victims aged fifteen and older who suffered a severe form of traumatic brain injury. Their study followed up with the participants after four years post-injury, thus demonstrating the importance of quality of life and its effects psycho- cognitively years after the initial TBI event.
Loss of Social Roles
Previous research shows that physical and cognitive disability are the major components affecting life satisfaction for traumatic brain injury victims (Hernandez et al., 2014; Huebner, Johnson, Bennett & Schneck, 2003; Resch et al., 2009; Williamson et al., 2013), with little research focusing on the impact that a change in life roles has on the individual. A study done by Juengst et al., (2015) found, however, that cognitive disability significantly predicted the trajectories of life satisfaction over motor disability. Results from their study further suggested an importance of life role participation to be measured in combination with depressive symptoms, as lack of research in life roles may actually be more predictive of life satisfaction. The shift of life roles may affect life satisfaction on a greater scale after TBI than even cognitive or motor disability (Juengst, 2015). An account of a sibling’s report of their siblings with TBI indicated a shift in their role and the effect it had on their sibling:
“The hardest thing for me to see is the way his friends and girlfriends treat him. Once the center of attention, now nobody wants to be around him. Inside he’s the most friendly, kind-hearted and loving person I know. I guess it pisses me off when people that used to love him have completely deserted him when being with him takes more effort than it did before. I’m afraid he’s lonely, and that he always will be somewhat lonely because of something he can’t control (Degeneffe & Lee, 2010).
Once a socially well-liked person, this victim of TBI is no longer viewed the same because of his loss of social roles after the injury, and the quality of his life changed due to this loss, isolating him from his social circle which created a sense of loneliness.
In a study using siblings of victims with TBI, the greatest indication of negative quality of life was associated with role strain (Degeneffe & Lee, 2010). Their study found that the brothers and sisters of those with TBI noted that their siblings struggled with maintaining employment, caring for themselves, relationships, physical health, financial dependency and an active lifestyle.
Life satisfaction, or quality of life, (Degeneffe & Lee, 2010) is often associated with higher rates of depression in victims after sustaining a TBI (Underhill et al., 2003). A study done by Juengst et al. (2015) investigated life satisfaction trajectories between one and five years post-injury using the SWLS (Satisfaction with Life Scale in conjunction with the PART-O (Participation Assessment with Recombined Tools Objective) measuring the level of participation among different life roles, such as home-maintainer, worker, family member, friend, leisure activities participant, volunteer and religious activities participant. These findings allowed them to identify four major groups: stable satisfaction, initial satisfaction declining, initial dissatisfaction improving and stable dissatisfaction. The rates of depression among these groups were associated with the roles they continued to participate in.
The stable satisfaction trajectory group had the highest rate of participants in life roles across the ages of 16 and 30, reporting the lowest rates of depression and cognitive disability (Juengst et al., 2015). The stable dissatisfaction group had the most participants between the ages of 31 to 59, with the least number of participants reporting high levels of participation across life roles, and also reported the most cognitive disability along with the most depressive symptoms. The members of the group categorized in satisfaction declining reported low participation as workers and in leisure activities, with a lower percent of participants aged 60 and older whose satisfaction had improved with time. Finally, the group with their initial dissatisfaction improving had the second lowest rates of life satisfaction and second highest rates of depression symptoms, but improved enough by the fifth year that they reported higher levels of satisfaction and lower levels of depression than the initial satisfaction declining group. These results show correlations between life satisfaction and depressive symptoms, in that the higher the life satisfaction, the lower the depressive symptoms and vice versa. These findings also reflect the positive correlation between having higher rates of life satisfaction when there are higher rates of life role participation. There is, however, a need for more research to be done in the arena of life role changes for individuals with traumatic brain injury (Juengst, 2015).
A longitudinal study used 253 adults with either mild complicated, moderate or severe TBI, and found associations between life satisfaction, community integration and emotional distress (Williams, Rapport, Millis, & Hanks, 2014). The study used measures such as the Satisfaction with Life Scale, Positive Affectivity and Negative Affectivity Schedules (which rated how much individuals were experiencing 10 positive affective states and 10 negative affective states), The Craig Hospital Assessment and Reporting Technique Short form (which measures mobility, social integration and occupation), The Community Integration Measure (10 items on a likert scale measuring levels of community integration) and The Brief Symptom Inventory-18 (which measured emotional distress, somatization, depression and anxiety). The study found a positive relationship between life satisfaction and community integration, which was inversely related to emotional distress. The participant’s subjective beliefs of their integration within the community was greater linked with positive affectivity and life satisfaction, and less so with social participation, mobility and occupational roles.
Loss of Identity
A sample of 279 brothers and sisters of individuals with TBI reported what they felt was the quality of life of their post-injured siblings (Degeneffe & Lee, 2010). Many of the participants reported that their siblings felt a loss of identity. One participant stated,
“He has lost his identity but has not really replaced it with a new one” another reported, “But he has no ambition to do things. He has no goals or anything in his life right now. I don’t know if he ever will” and yet another stated,
“He is also not interested in a career and just doesn’t know what to do with his life”.
The reports of loss of identity tended to include high reports of losing motivation to ever going back to a life they had before the injury. These negative psychological adjustment reports also indicated higher rates of depression.
In a study done by Carroll and Coetzer (2011), 29 adults with TBI participated in an investigation to see how perceived identity change correlated with grief, depression, self-awareness and self-esteem. The range of time since the injury ranged from 2.25 years and 40 years, and they gave participants several questionnaires, such as the Head Injury Semantic Differential Scale (HISDS-III), Brain Injury Grief Inventory (BIGI), Hospital Anxiety and Depression Scale-Depression, Rosenberg Self-Esteem Scale (RSES) and the Awareness Questionnaire (Self/Significant other/Clinician versions). They found that there were significant changes in self-concept of victims post TBI, with currently viewing themselves negatively in comparison to how they viewed themselves before the traumatic injury. They found that perceived identity change had a positive relationship with depression and grief, and perceived identity change had a negative relationship with self-esteem and awareness.
Semi-structured interviews conducted on nine adult males (aged between 22-59 years) who survived a TBI provided insight into their sense of lost identity, talking about being “different” from who they were before the injury (Freeman et al., 2014). The researchers used thematic analysis to analyze their responses, and loss of identity was reported amongst all nine of them. One participant, Tony, reported:
“…but, um it was about me and it’s been all… it was always about me… wanting the old-me I des…desperate to have that old-meback…”
Another participant, Andrew, said:
“… [sighs] yeah I… I feel, at the moment, I feel not worth as much because, erm, I’m struggling to…err do some of the more basic things than I use to and, erm, so if you measure your self-worth by the amount, the complexity of what you can do then my self-worth has….has dropped considerably”
Both participants expressed their unhappiness with their current identity. Other participants also discussed losses to their identity that they had previously valued, such as masculinity, physical fitness or intelligence (Freeman, Adams, & Ashworth, 2014). All of the men also talked about their withdrawal from their social world, mostly physically. When they were in the company of others, they reported feelin a sense of being silenced or passive for fear of being judged and patronized by others. For those that were more cognitvely aware, they felt feelings of shame about their acquired disabilities.
A study done by Walsh et al., (2015) investigated the relationship between social identity, social support and emotional status in 53 European adult survivors (39 men and 14 women) of traumatic brain injury. Their ages ranged from 20 to 65 years of age. To measure identity, they used affliliative and “self-as-doer identities”, where affiliative refers to often unconscious identities that demonstrate belongingness, such as family and nation, and “self-as-doer” identities are self-categorized and consciously constructed. Social support was measured by the Medical Outcomes Study social support survey, and emotional status was measured by the Hospital Anxiety and Depression Scale.
They ran their data through SPSS and found support for affiliative identity being a driving force behind wellbeing through social support and self-as-doer identity. There was a positive correlation between affiliative identity and social support, but affiliative identity was not correlated with emotional status. Self-as-doer identity was positively correlated with emotional status as well as social support. The sense of group belonging (affiliative identity) allows a sense of social support, and that perception of social support facilitates participation in activities, which then allows for the internalization of social identities (self-as-doer identity) (Stephen Walsh, Muldoon, Gallagher, & Fortune, 2015). Thus, the study highlights the importance of identity and social support for wellbeing in victims that sustained a traumatic brain injury. The data gives support for the idea that a loss in identity would deter individuals from seeking out participatory behaviors, thus creating an increase in emotional distress.
Through this literature review, there is support for the interrelatedness of quality of life, loss of self-identity and depression for individuals affected by traumatic brain injury. However, there were limitations to these studies. Some of the studies had small sample sizes, some of the studies only investigated male participants, and many of the studies had participants with wide age ranges, different locations of brain injury as well as differing levels of injury severity. When there are reports for loss of identity in victims post-TBI, there is a trend for lower levels of quality of life and higher rates of depression. Therefore, does loss of identity increase depressive symptoms in individuals with TBI?
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