3.1.3. Changed Livelihood, Post-Traumatic Epilepsy, Mental Fatigue, Functional Outcome and Overall Health at 1-Year and 7-Year Follow-Up

Changed livelihood, such as ongoing vocational rehabilitation, adapted work or sick leave because of STBI, was relevant for five men and five women at 7-year follow-up. These persons scored a significant deterioration in health (*p* = 0.003) compared with persons with unchanged livelihood (Table 4). Eight persons had medication for post-traumatic epilepsy at 7-year follow-up (Table 1). They scored significantly lower on functional outcome, GOSE at 1-year (*p* = 0.046) and 7-year follow-up (*p* = 0.016) compared with the other participants with STBI (Table 4). Mental fatigue was reported by 40% of the participants. Persons with moderate and severe mental fatigue at 7-year follow-up had a low functional outcome (GOSE 3–5). A significant negative correlation (r = −0.843, *p* < 0.01) at 7-year follow-up was found between mental fatigue and health, indicating that higher mental fatigue was related to poor health (Table 3).

#### 3.1.4. Anxiety, Depression and Overall Health at 1-Year and 7-Year Follow-Up

A majority of the participants (17/21) scored <8 on HAD, indicating no anxiety or depression at both follow-ups. There was a significant negative correlation between selfreported overall health and anxiety and depression both at 1-year follow-up—anxiety (r = −0.539, *p* = 0.017), and depression (r = −0.466, *p* = 0.044), and at 7-year follow-up– anxiety (r = −0.500, *p* = 0.025), and depression (r = −0.790, *p* < 0.001). Thus, no anxiety or depression indicates high perceived health.

#### *3.2. Qualitative Results*

The qualitative results were presented as two categories, each with three subcategories. The first category was characterised by adaptation for well-being, and the second by the transformation process to well-being (Table 5).

**Table 5.** Perceptions 7 years after STBI.


#### 3.2.1. Adaptation for Well-Being

Adaptation for well-being based on personal feelings is characterised by having the ability to adapt, being able to address the difficulties of adaptation, and setting reasonable goals.

#### Having the Ability to Adapt

Having a variety of strategies such as a positive outlook on life, being able to use past experiences, having the ability to use compensatory strategies, having a pragmatic lifestyle, going ahead and having a family, was described as being helpful for adaptation and well-being. There were small things that made daily life difficult, but they were accepted. Participants described being aware that life goes up and down and bearing in mind that a damaged brain finds new ways, and they also referred to themselves as being lucky. Participants described disabilities such as balance problems, hearing loss, becoming blind in one eye, mental fatigue, post-traumatic epilepsy, irritability, pain and impaired memory even though they reported good recovery. Frequently, this only came up in passing at the end of the interviews or in response to a direct question, even though they had described their recovery as being good.

*"The injuries I have are permanent and it will probably be like this for ever"* ... ... *"I'm learning to live with it,"* ... ... *"I'm the sort of person who chooses to be happy about what is good instead of being sad about what is not good so I am always positive"* ... ... *"We enjoy the place where we live and do things that we usually do so we say, enjoy your life, this is quality of life. So in the future, we will continue to feel good and take care of each other. You can always find solutions to things. I don't have much to complain about—I can walk, I can eat, I can dress myself, so what's the problem? So compared with many others"* ... ... *"So it's just a matter of choosing how to act"* ... ... *"I do not attempt more difficult things than I can manage quite easily."* (Female, 36 years)

The Difficulties of Adaptation

The participants described difficulties in understanding the extent of their STBI as being something life-threatening. They had no real experience of what had happened due to the initial weeks of amnesia and neuro-intensive care. Comparing how life was before STBI and how it had become afterwards impeded adaptation and well-being. Adaptation was a continuous, ongoing process for those with severe impairments. Existential changes were described, how their life had been turned upside down, how a new perspective had led to new decisions and compelling reasons to change lifestyle due to STBI with long-term disabilities and new experiences. Denying disabilities, feelings of guilt, shame, loneliness, isolation and avoidant behaviour were described as being obstacles which they had to overcome and which had affected their adaptation and well-being.

*"Yes. Umm, yes, I'm getting more and more depressed, I have become more depressed since this happened because it is always at the back of my mind, my head ruined so much for me. Otherwise I haven't noticed any other changes after my injury. I guess my memory can be a bit poor sometimes. So these days, I generally have a feeling of sadness. I have almost lost the joy of living, my life feels like that today."* (Male, 27 years)

#### Reasonable Goals as a Way to Adapt

The participants described an ability to find new paths for themselves or for others. The ability to adapt is dependent on reasonable goals being set and that they are feasible. For most of the participants, their overall goal was to achieve independence and meaningful everyday life. Taking care of the family, achieving good home conditions, having meaningful leisure time in accordance with the new conditions, and economic independence were all important factors. Because they had been through life-threatening trauma, another successful way to move forward was to avoid drugs, alcohol and a new head injury, to invest in security and in that way reach their set goals. Participants with major disabilities described how their social situation, including their family, social network, social care interventions, housing and rehabilitation, was a prerequisite for independence and suitable goals to be achieved for well-being.

*"Yes, I was so much younger when this happened; it's completely different today. I'm not so keen on alcohol and partying and stuff like that. I'm completely different. I'm much more mature today with a family and my work* ... ... ... *So my future is to take care of the kids (laughs) and take care of my own little family."* (Male, 31 years)

#### 3.2.2. The Transformation Process to Well-Being

The participants described a transformation process with new challenges over the years: becoming aware of their disability, finding new ways in life, learning to live with a disability and then achieving well-being.

#### New Challenges

The participants described that returning to ordinary everyday life and achieving well-being had been a challenge over the years. Some participants said this had taken a short time, while others said it is a lifelong task, throughout the process of transformation with disabilities. Some of them described that they had left or tried to leave the incident behind them because they wanted life to move forward and STBI had been emotionally stressful. Remaining disabilities were described as a challenge and were mentioned even though some of them had described themselves initially as being completely restored. Role changes in families and in working life, difficulties in leisure time, and maintaining social relationships were described as new challenges that affected well-being. Participants with continuing severe disabilities described how daily life in itself was a challenge, how they were dependent on others, and, in many cases, did not have a meaningful everyday life.

*"But just remembering things! That's the worst! I figure it out in the end. I usually do and when I have to tell someone something, it may take several hours for me to figure things out, but I do."* (Female, 55 years)

#### Awareness of Disability

The participants described they began the process of acceptance when they became aware of their disability instead of ignoring or not noticing it. After becoming aware, the participants described their expectations and hopes regarding improvement, a wish to go further in order to achieve well-being. No one had asked for emotional or cognitive rehabilitation, and they described that the rehabilitation they had been given had focused on physiotherapy. Now, 7 years later, it was disappointing that they had to be, as they put it, responsible for their own rehabilitation. In their opinion, more support and rehabilitation were needed in order for them to improve further and achieve well-being.

*"Yes, at the start, during the first year, I assumed I would be able to recover but 7 years later, I have realised that I will not return to the same level where I once was. I know that. I am fully aware of that."* (Female, 36 years)

#### Living with a Disability

Living with a disability was described as being able to cope, do things differently, avoid obstacles and overcome challenges. Continuing living with a severe disability was described as frustrating, causing loneliness in everyday life, exclusion from work, social networks, leisure activities and sometimes also from the family. Striving to become more independent and to take personal responsibility was described to make it easier to accept a disability and accept changes in life and achieve well-being.

*"* ... ... *I can*´*t talk as I would like to* ... *nothing. Nothing. I'm so damn lonely.* ... *Yes, tears sometimes come when it's a little hard. Yes, but it's just a matter of accepting that this is how it is".* (Male, 57 years)

#### *3.3. Merged Results and Interpretation*

The qualitative and quantitative results complement each other since the qualitative results are more explanatory than the quantitative results and cover other aspects. One way in which they differed was that the qualitative results showed an ongoing process during the years following an STBI injury, while the quantitative results showed the impact on health status at certain points in time (after 1 year and 7 years).

Participants described a process of transformation and adaptation, from being a severely injured person with STBI to striving to become an "ordinary" person with a sense of well-being, ending up either with or without a disability in a long-term perspective. Their lives were still impacted to a greater or lesser extent 7 years later by the fact they were a person with STBI. However, a good recovery, high functional outcome and overall good health were relatively unchanged between 1-year and 7-year follow-up. Well-being was described as a recovered or changed life situation that had been accepted. The family was described as being important for transformation, adaptation and well-being. Living with STBI had created opportunities for existential changes and positive outcomes, for example, that over the years, alcohol and drug abuse had ceased. Refraining from comparing their life now with how it was before the injury, having a meaningful everyday life, a positive outlook on life, and the ability to use compensatory strategies, such as making use of previous experiences of challenging events, were helpful for adaptation and well-being. These experiences and the process itself could not have been captured through any of the surveys conducted at a given point in time to measure health or functional outcome.

Changed livelihood because of STBI continued to affect health and well-being after 7 years. For persons with a severe disability, adaptation was a continuous and ongoing process and health and well-being were low. Severe disability implied impairment in all daily activities. Over the years, health and well-being decreased as isolation and loneliness increased.

For persons with moderate disability, workability and social and leisure activities were reduced. Their self-estimated health was on the same level as persons with good recovery, but they described poorer well-being. Hope for progress, being able to cope with an adapted job or find new leisure activities could compensate and improve well-being.

Good recovery was reported for just over half of the participants. High functional outcome, self-reported health and perceived well-being were found even though some of the persons still suffered from disabilities. Disabilities was not described in the interview as being a crucial factor that determined their well-being. They had moved on in life, looking for the future and put the STBI behind them. Even after 7 years, the initial disability that had changed family dynamics was still affecting their well-being and they reported that close relatives pointed out minor personality changes even though they felt completely recovered. Participants who now had a new partner in their life described how the new partner was not able to compare things with how they had been before and that was a relief.

Having an STBI caused by high energy trauma was not related to functional outcome or overall health but for the majority of those affected (6/8), low well-being was reported because it affected their ability to work, their social life and leisure time negatively. Women (6/7) were affected by high energy trauma and scored lower on functional outcome and perceived poorer well-being than men but there was no difference between women and men concerning overall health. Despite some difficulties, there were women who had become a mother but needed the support of loved ones to make daily life with children work. A lack of independence and not being able to work were obstacles that affected well-being negatively.

An earlier brain injury that had required hospitalisation was related to a low degree of overall health and perception of well-being. For persons with post-traumatic epilepsy, the functional outcome was also significantly lower compared with those who did not suffer from epilepsy. Post-traumatic epilepsy also affected well-being but not reported overall health. A few persons reported anxiety and depression and scored lower health, but nevertheless, they had a sense of well-being. Persons with moderate and severe mental fatigue had a low functional outcome and low overall health and none of them perceived well-being or were back in work.

STBI still affects the person's life to a greater or lesser extent several years after injury. Good recovery and overall good health are reported and also better well-being from interviews due to acceptance of a recovered or changed life situation.

#### **4. Discussion**

By using a mixed method, we were able to examine an overall perspective of health and well-being for persons who had suffered STBI up to seven years earlier. We found that STBI was still affecting their lives to a greater or lesser extent even though good functional outcomes and overall good health were reported. However, participants reported improved well-being due to recovery or acceptance of their changed situation.

The merged results show that a meaningful everyday life, a positive outlook on life, an ability to use compensatory strategies, such as previous experiences of challenging events, were all helpful for adaptation and well-being. These aspects were not assessed by any of the instruments used to measure health or functional outcome. The injured persons described that focusing on overall health and well-being instead of their disability, even with a remaining impairment, was one way of adapting to the new situation. The present study also found that a pragmatic lifestyle, keeping up with the family and having a meaningful everyday life were ways to overcome challenges in the transformation process for adaptation and well-being after STBI. Achieving health and well-being is connected to what each person considers to be acceptable as a normal everyday life and over the years, new perspectives have emerged.

In this study, several participants mentioned an ongoing disability even though they reported good recovery, health and well-being. This supports that it is not the absence of disease or disability that defines health [10] and that long-term follow-up of unidentified disabilities can be valuable. This was also described in an earlier study when full recovery was reported by persons with TBI after 10 years or more, even though they experienced persistent problems that affected their daily lives [56].

The only exclusion criterion at baseline was death within three weeks. One established weakness of many functional outcome instruments and health scales used in TBI studies is that if there is a pre-existing problem, such as a previous brain injury, drug or alcohol abuse, or psychiatric disorder, it is not possible to take it into account or whether there is a need for guidance when completing the questionnaire [57]. As our merged results take both self-reported health and perceived well-being into account, it is possible to see that it does not only reflect the results but also how pre-existing problems affect the situation.

The merged results show that for the participants with a severe disability, i.e., impairment in all daily activities, adaptation was a continuous, ongoing process and health and well-being were low. Over the years, health and well-being decreased as isolation and loneliness increased. Friends withdrew and sometimes their family members too, even if the family was reported to be helpful for adaptation and well-being. In other studies, STBI persons with more severe residual conditions described difficulties adapting to the new situation and highlighted the importance of having a family, close relationships and access to service and rehabilitation [58] and that feeling self-worth and maintaining self-confidence are important for well-being [59]. Severe disability is known to be related to dissatisfaction with health [28]. In a recent study of persons with STBI, it was shown how rehabilitation could help to adapt friendships and support earlier relationships for the injured person several years after the injury [60].

Participants with moderate disability had the same level of health scores as participants with good recovery but described poorer well-being because of reduced work abilities and social and leisure activities. Changed livelihood affected the health and well-being of almost half of the participants in this study. The categorisation of persons with TBI as either working or unemployed does not provide a complete picture since many people who work fewer hours than they did before the TBI are less satisfied and fail to sustain work [61]. Losing their economic independence was an obstacle and had a negative impact on well-being, especially for the women in this study. The participants in this study were in their most productive years; many of them were on sick leave because of STBI and some of them still had ongoing vocational rehabilitation. There is an obvious need for an intervention programme that is adapted to working life [14].

In this study, participants with known alcohol and drug abuse before injury had ceased all such abuse after 7 years, but none of these persons described any meaningful daily activity, thus service and support were still needed for health and well-being. In our study, the women were 10 years younger than the men. For several of them, their STBI had been caused by high energy trauma and they had lower functional outcomes than men and poorer well-being but acceptable overall health. With the exception of the age factor, our study is in line with a recent multi-centre study which found that women reported more severe outcomes, depending on TBI severity and older age [24]. A recent prediction study reported that women, persons who were unemployed before injury and persons with more severe TBI at 10-year follow-up had lower HRQL, suggesting that these persons should perhaps be targeted for regular follow-up [62]. However, there were only seven female participants in our study, and, therefore, it is not possible to draw any major conclusions regarding whether being a woman has any significance for the outcome.

The merged results showed that there was hope for progress for persons with moderate disability, to cope with work or to find new activities that could be a form of compensation and improve their well-being. Low occupational activity 10 years after TBI gives a low rating for psychosocial function [22], and in our study, we found the same for well-being. Both low life satisfaction and poorer well-being highlight the need for interventions that will promote a meaningfully productive life after TBI [23]. It was found that for up to 15 years post-injury, TBI patients experienced poorer general health, social isolation, and fewer

opportunities to work compared with matched persons [63]. This is further confirmation that long-term follow-up after TBI should be considered.

Some of the participants with good recovery mentioned in passing some remaining disabilities. They had moved on in life, put the STBI behind them, reported a sense of well-being and were looking to the future. Negative and stigmatizing reactions from the environment because of earlier STBI were described in another study [64].

Persons with previous brain injury and those with post-traumatic epilepsy were affected with regard to both health and well-being and a poorer functional outcome for those with post-traumatic epilepsy. In an earlier study of persons with STBI, at 10-year follow-up, the frequency of epilepsy was nearly the same as in this study, but their scores for depression were six times higher [14]. In our study, only a few participants reported anxiety and depression at both follow-ups. However, the few who reported anxiety and depression scored lower health but nevertheless perceived well-being. In another followup study of survivors, 5–7 years after TBI, anxiety, depression and low self-esteem had stronger associations with persistent and new disabilities than initial severity or cognitive impairment [65]. It is, therefore, relevant to investigate these problems again a long time after the injury [65]. Persons with high scores on the mental fatigue scale had low functional outcomes and low overall health. None of them were back in work, which is in accordance with previous research that showed that higher mental fatigue was linked to low workability and employment [66]. These findings were of importance to consider and highlight the need for follow-up for persons even a long time after STBI since they could benefit from treatment and rehabilitation, including interventions for fatigue.
