Adolescence is a developmental phase between childhood and adulthood (Furlong et al., Reference Furlong, Woodman and Wyn2011; Sawyer & Azzopardi, Reference Sawyer and Azzopardi2018), which The World Health Organization locates as occurring between the ages of 10 and 19 years (Dick & Ferguson, Reference Dick and Ferguson2015). While the onset of puberty marks the beginning of adolescence, its conclusion is defined socially and thereby varies by culture, but is generally signalled by the assumption of adult roles (Blakemore & Mills, Reference Blakemore and Mills2014; Inhelder & Piaget, Reference Inhelder, Piaget, Inhelder and Piaget2013; Ledford, Reference Ledford2018). To facilitate the transition to adulthood, the adolescent period sees considerable developmental advancement in the form of cortical development, cognitive maturation and heightened focus on development of social relationships and identity formation.
The adolescent period is associated with substantial cortical development, namely in the form of synaptic pruning and the associated reduction in cortical grey matter (Krongold et al., Reference Krongold, Cooper and Bray2017; Tamnes et al., Reference Tamnes, Østby, Fjell, Westlye, Due-Tønnessen and Walhovd2010; Zhou, Lebel, Treit, Evans, & Beaulieu, Reference Zhou, Lebel, Treit, Evans and Beaulieu2015), as well as acceleration in the myelination of axons, enhanced axon density and increased white matter volume (Geeraert et al., Reference Geeraert, Lebel and Lebel2019; Kwon et al., Reference Kwon, Pfefferbaum, Sullivan and Pohl2020; Lebel & Beaulieu, Reference Lebel and Beaulieu2011; Lebel & Deoni, Reference Lebel and Deoni2018). Such changes are associated with the development of higher cognitive functions, including increased cognitive control, improved behavioural regulation and improved social cognition (Dumontheil, Reference Dumontheil2014, Reference Dumontheil2016; Vijayakumar et al., Reference Vijayakumar, Allen, Youssef, Dennison, Yücel, Simmons and Whittle2016).
Together, attaining a more intricate cortical system and increasingly sophisticated cognitive operations have implications for adolescent social and emotional development and identity formation (Chervonsky & Hunt, Reference Chervonsky and Hunt2019; Dumontheil, Reference Dumontheil2014, Reference Dumontheil2016; Nelson et al., Reference Nelson, Leibenluft, McClure and Pine2005; Turkstra et al., Reference Turkstra, Williams, Tonks and Frampton2008; Vijayakumar et al., Reference Vijayakumar, Allen, Youssef, Dennison, Yücel, Simmons and Whittle2016; Yeates et al., Reference Yeates, Gerhardt, Bigler, Abildskov, Dennis, Rubin and Vannatta2013). The development of advanced social skills is a particularly important area of growth during adolescence, as peer relationships offer opportunities for belonging, a source of social support, and a vehicle to establishing and maintaining relationships, thus preparing for intimate and supportive adult relationships (Baumeister & Leary, Reference Baumeister and Leary1995; Flynn et al., Reference Flynn, Felmlee and Conger2017; Irons & Gilbert, Reference Irons and Gilbert2005; Roach, Reference Roach2018; Zimmer-Gembeck, Reference Zimmer-Gembeck2015, Reference Zimmer-Gembeck2016). Group membership and feeling connected to others is crucial for the adolescent, as peer relationships can significantly impact their psychological wellbeing as well as their capacity to develop an integrated sense of identity (Irons & Gilbert, Reference Irons and Gilbert2005; Lodder et al., Reference Lodder, Scholte, Goossens and Verhagen2017; Ragelienė, Reference Ragelienė2016; Zimmer-Gembeck, Reference Zimmer-Gembeck2015, Reference Zimmer-Gembeck2016).
Identity development occurs in the context of a heightened sensitivity to sociocultural signals, as the adolescent seeks to discover who they are and where they fit in relation to others (Blakemore & Mills, Reference Blakemore and Mills2014; Kroger, Reference Kroger2007; Ragelienė, Reference Ragelienė2016). Erikson (Reference Erikson1963 and Reference Erikson1968) emphasised identity formation as a key task of adolescence, where the young person reviews old self-conceptions, explores a range of possible identities and integrates these. This process is enabled by maturing cognitive abilities that allow complex self-examination and increased interest in autobiographical events and personal continuity (Habermas & Bluck, Reference Habermas and Bluck2000; Inhelder & Piaget, Reference Inhelder, Piaget, Inhelder and Piaget2013; Klimstra, Hale, Raaijmakers, Branje, & Meeus, Reference Klimstra, Hale, Raaijmakers, Branje and Meeus2010); with the process of identity formation occurring as a process of exploration and commitment (Luyckx et al., Reference Luyckx, Goossens, Soenens and Beyers2006, Reference Luyckx, Seiffge-Krenke, Schwartz, Goossens, Weets, Hendrieckx and Groven2008; Schwartz, Luyckx, Goossens, Beyers, & Missotten, Reference Schwartz, Luyckx, Goossens, Beyers, Missotten, Schwartz, Luyckx and Vignoles2011). Difficulties in negotiating these developmental tasks can leave young people with higher rates of depression and lower self-esteem as they move into adulthood (Luyckx et al., Reference Luyckx, Seiffge-Krenke, Schwartz, Goossens, Weets, Hendrieckx and Groven2008). Experiencing traumatic brain injury (TBI) within this context of significant cognitive, social and identity development could have significant consequences for an adolescent.
Traumatic Brain Injury
TBI is broadly defined as ‘an alteration in brain function, or other evidence of brain pathology, caused by an external force’ (Menon et al., Reference Menon, Schwab, Wright and Maas2010, p. 1638). Worldwide, TBI incidence appears to peak in early childhood, adolescence and again in late life (Bener, Omar, Ahmad, Al-Mulla, & Abdul Rahman, Reference Bener, Omar, Ahmad, Al-Mulla and Abdul Rahman2010; Hyder, Wunderlich, Puvanachandra, Gururaj, & Kobusingye, Reference Hyder, Wunderlich, Puvanachandra, Gururaj and Kobusingye2007; Taylor et al., Reference Taylor, Bell, Breiding and Xu2017). A review of studies representing populations in North America, Europe, Australia and New Zealand estimated the annual incidence of TBI (based on emergency department presentations) occurring in those aged younger than 20 years as 691 per 100 000 (Thurman, Reference Thurman2016).
Recent years have seen an increase in the data available regarding the direct consequences of an adolescent TBI, namely, post-concussive symptoms. There is mounting evidence to suggest that up to 32% of adolescents may continue to endure symptoms such as migraines, fatigue, thinking problems and emotional difficulties beyond the initial month following TBI (Davis et al., Reference Davis, Anderson, Babl, Gioia, Giza, Meehan and Zemek2017; Eisenberg et al., Reference Eisenberg, Meehan and Mannix2014; Zemek et al., Reference Zemek, Barrowman, Freedman, Gravel, Gagnon, McGahern and Moore2016) and suggest little improvement in the subsequent years (Jones et al., Reference Jones, Prah, Starkey, Theadom, Barker-Collo, Ameratunga and Feigin2019; Starkey et al., Reference Starkey, Jones, Case, Theadom, Barker-Collo and Feigin2018). Higher rates of psychological problems (Albicini & McKinlay, Reference Albicini and McKinlay2015; Chrisman & Richardson, Reference Chrisman and Richardson2014; Laliberté Durish et al., Reference Laliberté Durish, Pereverseff and Yeates2018) and reduced quality of life (Di Battista et al., Reference Di Battista, Soo, Catroppa and Anderson2012; Fineblit, Selci, Loewen, Ellis, & Russell, Reference Fineblit, Selci, Loewen, Ellis and Russell2016; Jones et al., Reference Jones, Prah, Starkey, Theadom, Barker-Collo, Ameratunga and Feigin2019) have also been reported for youth who have experienced a TBI. It is possible that TBI sustained during adolescence might also lead to disrupted acquisition of new social and cognitive skills in the long-term, as the individual matures (Brenner et al., Reference Brenner, Dise-Lewis, Bartles, O’Brien, Godleski and Selinger2007; Di Battista et al., Reference Di Battista, Soo, Catroppa and Anderson2012; Ewing-Cobbs et al., Reference Ewing-Cobbs, Barnes, Fletcher, Levin, Swank and Song2004; Savage et al., Reference Savage, DePompei, Tyler and Lash2005; Yeates et al., Reference Yeates, Bigler, Dennis, Gerhardt, Rubin, Stancin and Vannatta2007).
Unfortunately, longer-term consequences of adolescent TBI, particularly those that relate to impacts beyond the experience of post-concussive symptoms, are often neglected in the research (Keightley et al., Reference Keightley, Côté, Rumney, Hung, Carroll, Cancelliere and Cassidy2014; Savage et al., Reference Savage, DePompei, Tyler and Lash2005). There is a particular sparsity of qualitative research that seeks to inform an understanding of the adolescent experience of TBI. Although there is a 36-year history of high quality qualitative literature available regarding the broader impacts of TBI on adults (e.g. Lefkovits et al., Reference Lefkovits, Hicks, Downing and Ponsford2020; Levack et al., Reference Levack, Kayes and Fadyl2010; Tyerman & Humphrey, Reference Tyerman and Humphrey1984), there are only a handful of equivalent studies involving adolescents (Choudhury, Kolstad, Prajapati, Samuel, & Yeates, Reference Choudhury, Kolstad, Prajapati, Samuel and Yeates2020; Davies et al., Reference Davies, Bernstein and Daprano2020; Di Battista, Godfrey, Soo, Catroppa, & Anderson, Reference Di Battista, Godfrey, Soo, Catroppa and Anderson2014; Gauvin-Lepage & Lefebvre, Reference Gauvin-Lepage and Lefebvre2010; Iadevaia et al., Reference Iadevaia, Roiger and Zwart2015; Mealings & Douglas, Reference Mealings and Douglas2010; Rennie & Goforth, Reference Rennie and Goforth2020). While these studies offer invaluable insights into the adolescent experience of TBI, they each present inevitable limitations (e.g. small samples; limited scope, such as focus on more severe injuries or return to school problems; age groups spanning childhood through adolescence; varying time elapsed since injuries). Most do not specifically explore the longer-term impacts of sustaining an adolescent TBI. Given the uniqueness of this life stage, it is imperative that our understanding of the potential impacts of sustaining a TBI in the adolescent developmental context continues to grow. The present study thus sought to broadly explore the experience of TBI in the adolescent developmental context, via interviews with young adults who had sustained one or more such injuries approximately 8 years prior, when aged between 13 and 17 years.
Methodology
Study design and participants
This research involved semi-structured interviews, the most common method of collecting qualitative data (Doody & Noonan, Reference Doody and Noonan2013), and reportedly the most useful way to understand the meanings people make of their experiences (Morrow, Reference Morrow2007). Interview data were interpreted using a general inductive thematic analysis approach, an uncomplicated, flexible, method of analysis which involves the search for themes across a dataset (Braun & Clarke, Reference Braun and Clarke2006).
Participants who sustained a TBI during adolescence were identified from the population-based Brain Injury Incidence and Outcomes in the New Zealand Community (BIONIC) study. Comprehensive descriptions of BIONIC study methodology are published elsewhere (Feigin et al., Reference Feigin, Theadom, Barker-Collo, Starkey, McPherson, Kahan and Ameratunga2013; Theadom et al., Reference Theadom, Barker-Collo, Feigin, Starkey, Jones, Jones and Barber2012). Briefly, BIONIC identified all incident cases of TBI in the Hamilton and Waikato districts of New Zealand over a 12-month period (1 March 2010 to 28 February 2011; Feigin et al., Reference Feigin, Theadom, Barker-Collo, Starkey, McPherson, Kahan and Ameratunga2013). Participants were identified via multiple overlapping sources including hospital records, accident and medical clinics, general medical practices, schools, sports clubs and self-referral. TBI was defined according to World Health Organization criteria as an acute injury to the brain due to mechanical energy to the head from external physical forces (Carroll, Cassidy, Peloso et al., Reference Carroll, Cassidy, Peloso, Borg, von Holst, Holm and Pépin2004). TBI was operationally defined as the presence, at the time of injury, of one or more of: (1) confusion or disorientation; (2) loss of consciousness; (3) post-traumatic amnesia; and/or (4) other neurological abnormalities (e.g. focal signs, seizure (Carroll, Cassidy, Holm, Kraus, & Coronado, Reference Carroll, Cassidy, Holm, Kraus and Coronado2004). These symptoms needed to be primarily related to the TBI (e.g. not substance use, other injury, psychological/medical conditions).
For the present study, demographic and contact details were obtained for 51 adolescents of the original BIONIC study cohort, who were: (1) aged 13–17 years at the time of injury and (2) previously identified as willing to be contacted for future research. Purposeful sampling was used to select participants who varied with regard to ethnicity, age, gender, injury severity and rural/urban location, so as to maximise the richness of data obtained (Chwalisz et al., Reference Chwalisz, Shah and Hand2008; Twining et al., Reference Twining, Heller, Nussbaum and Tsai2017). Recruitment continued until ongoing analysis suggested the data had reached saturation; that is, the point where themes were rich and fleshed out, and no new categories or themes were evident (Nutt Williams et al., Reference Nutt Williams, Morrow, Williams and Morrow2009). As seen in Table 1, five participants (38.5%) were female and eight (61.5%) male. The age of participants ranged from 13 years 2 months to 17 years 11 months (mean = 15 years 4 months) at the time of injury. Approximately 7 years 8 months (range = 6 years 8 months to 8 years 4 months; mean = 7 years 8 months) had passed since the TBI had occurred. The majority of participants had mild TBI (92.3%, n = 12), with one (7.7%) experiencing an injury categorised as moderate. Over half (n = 7) of the participants reported sustaining one or more additional mild TBIs in the time since the initial injury recording by BIONIC. The majority self-identified as New Zealand European (84.6%, n = 11), with the remaining two identifying as Māori and as Pacifica. Most injuries had occurred in the context of sporting activities (n = 5, 38.5%) and road accidents (i.e. bicycle and motor vehicle; n = 7, 53.8%), with one resulting from assault (7.7%).
Participant and Injury Details
Names have been changed to preserve anonymity and to make the reading of the findings more sensible.
TBI, traumatic brain injury.
Procedure
Ethical approval was obtained from the University of Auckland Human Participants Ethics Committee (Reference 019641). Letters of invitation and information sheets about the study were sent to 35 potential participants, introducing the researcher and the purpose of the study. After 2 weeks, potential participants were contacted by telephone to inquire if they would like to participate. An opt-out clause was included, allowing participants to contact the researcher first if they did not wish to be telephoned. Telephone contact was made with 21 participants; the remaining 14 were uncontactable. When telephoned, participants were generally willing to participate in the research. Eight declined, offering reasons such as being busy with university or having moved overseas. Data were collected by the primary researcher (TM) as part of completion of her Doctorate in Clinical Psychology and followed the recommended procedure for semi-structured interviews (Chwalisz et al., Reference Chwalisz, Shah and Hand2008; Doody & Noonan, Reference Doody and Noonan2013). The interview schedule, devised surrounding several areas of inquiry elicited from prior literature (e.g. how school/friendships/work had gone following their injuries) and was deliberately wide-ranging, consisting of open-ended questions (Morrow, Reference Morrow2007). The researcher usually began with an open comment, such as ‘tell me about the brain injury you had’, before asking further open questions related to matters initiated by the participant.
A ‘naïve inquirer’ position was assumed, where the interviewer presented as knowledgeable, but less so than participants, and sought concrete examples from the participant’s life rather than questioning theoretical ideas (Hermanns, Reference Hermanns, Flick, con Kardoff and Steinke2008; Leech, Reference Leech2002). Interviews were held at participants’ places of residence or a suitable alternative preferred location (e.g. local café). Interviews varied in duration (range = 35–100 min; mean = 58 min) and were audio recorded. Participants were compensated for their time with their choice of a movie or supermarket voucher (value $20).
Data analysis
Interviews were listened to at least twice and then transcribed by the primary researcher (TM) prior to her conducting analysis. The accuracy of 10% of transcripts was checked by an external auditor (a qualitative researcher working within the same School of Psychology as the primary researcher who was not involved in the present study in any other capacity), who considered the transcripts were accurate when compared against interview audios. Transcripts were entered into a qualitative data analysis computer software package (QSR International’s NVivo 12 software; see Silver & Lewins, Reference Silver and Lewins2014). A reflexive iterative approach was applied, with recursive moving back and forth through the dataset (Srivastava & Hopwood, Reference Srivastava and Hopwood2009; Twining et al., Reference Twining, Heller, Nussbaum and Tsai2017). Braun and Clarke’s (Reference Braun and Clarke2006 and Reference Braun and Clarke2017) six-phase approach to thematic analysis was applied, including: (1) Data familiarisation – Reading/rereading transcripts to familiarise with content, with notes taken on possible patterns. (2) Coding – Several potential categories/codes were derived in NVivo, and sections of text from each interview collated within NVivo files to represent each code. Upon completion of this phase, 88% of data were allocated to at least one category. (3) Identifying themes – Relationships amongst the listed codes were considered and codes were sorted into potential themes/categories of themes. Relevant data extracts were collated in each theme. (4) Reviewing and refining themes – Candidate themes were checked against the data to ensure that each theme captured the essence of a meaningful pattern in the data. Again, 10% of the data allocated within themes was checked by an independent auditor. Themes were refined, combined, separated or discarded. (5) Defining/naming themes – The focus of individual themes was considered, and themes were further refined. (6) Writing up analysis – The analytic narrative was woven with data extracts to convey the essence of the data. Extracts were cleaned by removing identifiers, repetitions and redundant discourse markers. Note that all names used are pseudonyms to protect participant confidentiality.
Results
Thematic data analysis produced two key categories of themes relating to the perceived impact of adolescent TBI. As shown in Table 2, these categories were: (1) Impacts on Important Areas of Life, with themes of impacts on school, career opportunities, work functioning and social interactions; and (2) Impacts on Identity, which included themes of feeling ‘stupid’, self-consciousness, loss of social identity and dependence on others.
Summary of Key Themes
Impacts on important areas of life
Schoolwork suffered
For some participants, the greatest impact of the TBI was felt through their academic abilities. The timing of injury seemed to influence the degree of this impact. For example being able to recover when injuries occurred between periods of exam pressures:
‘I was really tired, like I wasn’t as attentive in class as I probably could have been. But it wasn’t at a time where there was, like, big exams or things going on, so by the time that I was better or felt better, I could catch up’. [Amy]
A larger group of participants described enduring symptoms and ongoing problems at school. Changes were attributed to problems with thinking, focussing and remembering information.
‘I’d just find it real hard, you know, sitting down and trying to study for this information, I’d probably do an hour and then go off and get distracted by something else ‘cause I just couldn’t focus and I just wasn’t remembering that information’. [Danielle]
These difficulties had broad implications. Ethan noted that ‘it got pretty downhill at school in those years’ following his injury, feeling his memory ‘deteriorated rapidly’. Dylan described feeling that new thinking problems placed him at a disadvantage, causing frustration and sadness:
‘I feel like all my exam results were never a true reflection of what my actual classwork was like. I’d be just scraping, you know, C+, B in my exams but I could get A’s in my assignments … you review the exams later, and it’s like “well, I know the answer. If you ask me the question verbally, I could probably give you the answer verbally”’.
Problems with thinking had persisted to disrupt some participants’ ability to engage at university, many years after their injury. For Brandon, paying attention remained an issue at the time of interview:
With that getting distracted, paying attention, the long periods of paying attention. … It just feels like, even if I try really hard to concentrate sometimes, yeah, zone out. I find I have to read everything twice to actually remember it.… When I’m having a bad day … I’ll probably be able to pay attention for about five minutes and then I’ll zone out, five minutes, and then zone out.
Career opportunities became limited
While many participants felt they regained their previous performance capacities at school, this was unattainable for some. Matthew believed his TBI prevented him from going to university, where he had hoped to study engineering: ‘If I didn’t have it [TBI], I would have gone to university. But then since it has, I couldn’t keep myself going, to be able to get into university’. Dylan felt similarly limited:
‘I knew what I wanted to do… I had a general direction, a purpose to what I was doing and then it changes… you can no longer think clearly in part, you can’t do things anymore… all of a sudden your options in terms of study outside of school become quite limited’.
Ryan shared how fatigue caused him to drop out of school: ‘I didn’t finish high school. Like the year afterwards I went back and did two classes and that’s all I could do…[it] was just the fatigue really’.
Not everyone felt that changes in their academic abilities had drastically affected their career choices. Adam reflected that he would still have chosen his current profession: ‘I definitely would have been a tradie, aye. I don’t think I could sit down all day at a computer…Yeah, wouldn’t be my thing’.
Struggling with work
Almost 8 years post-TBI, participants still felt impacted as they established themselves in their careers. Thinking difficulties made learning on the job difficult for some. Matthew, for example, struggled in his labouring job:
‘If it’s at work and I don’t get it, I usually ask once … sometimes it’s like “well now you know how to do it, you can do it,” and then they tell me off … if I ask [again] they don’t like it … then I’m trying to do it the way they showed me how to do it, and then they’re saying “aw you’ve done this wrong”’.
New difficulties meant that some participants experienced anxiety and rumination about their work performance. Struggling to trust her memory, Danielle described how she would ‘usually triple check’ her work, but would still find herself lying awake at night wondering if she had completed all the steps in a procedure: ‘If I’ve had a bad day at work or something, I can’t just go to sleep… I just I’m constantly thinking about it when I go to, trying to go to sleep’ [Danielle]. Some reported work-related anxiety contributing to feeling depressed and hypervigilant to errors: ‘I can remember for probably about two months just being so depressed … there was just that feeling “I’ve absolutely failed, I’ve messed up,” you know, just, impending doom’. [Dylan]
Not everyone with thinking difficulties felt these impacted their work negatively. Ethan described how his career choice provided motivation to ‘retrain’ his memory:
‘Working at my job now my memory has to be pristine, so I just retrained myself to remember every little detail of everything … I’ve got to remember part numbers, people, lots of stuff like that … my memory’s pretty good after, obviously since work I’ve had to really put my mind to things to be able to do it’.
For some, fatigue and migraines affected their work. Fatigue often meant that rest had to be prioritised, requiring sacrifices in other areas of life. Ryan recounted how a recent attempted return to a career path impacted his wellbeing, prompting him to quit:
‘I was working like 20 or 24 hours a week … And like I’d just get really worn out during the days, and on days off I’d be having to recover and then I’d go back to work and I do it again, and on the weekend I’d recover … and doing all that I still wasn’t doing full time work’.
Talia reported feeling overwhelmed and struggling to cope being exacerbated by fatigue and migraines:
‘It was just everything built up on top of each other…at the time [the migraines] were quite bad, and at this point they [Work and Income New Zealand] were trying to make me get a job, and sending me to seminars every week, and they were getting me to come in and see them every week … and that was just wearing me down and making me worse’.
Missing out socially
Another prominent pattern was reduced social involvement post-injury. Social changes often initially included missing out on sports, as participants had to stand down from sports post-injury. Feeling excluded from their teams was described as almost painful: ‘cause like my brother was playing, and so it was kind of gutting like, I’d go watch his games and knowing that I couldn’t jump on’. [Sam] While missing out was short-term for most, Dylan described grief, loneliness and a lost sense of belonging, as he could not return to sport:
‘I remember going and watching one of their rugby games, and then afterwards being in the changing room and just being absolutely ignored by everyone cause I wasn’t playing in the team … in that moment I probably felt the most alone I had ever felt’
Beyond sport, not having energy to ‘hang out’ with friends was an issue:
‘The biggest thing was just how I was so tired all the time … my friends would ask me out and I’d just want to lie in bed and do nothing’. [Brandon]
In contrast, Amy thought having her TBI as a younger teenager (14) meant she struggled less:
‘It was way before I started going to parties and driving and drinking and that kind of thing. So, if I was a bit older when it happened … I think it probably would have had more of an impact on my relationships at school, definitely, if I was a little bit older’.
Several participants expressed ongoing social changes related to persisting symptoms. Talia, for instance, described the social impact of difficulty remembering faces since her injuries:
‘It’s hard but you just pretend you know who they are. Like the amount of times people come up to me and are like, “hi, how are you?” and in my head I’m just like, “who the hell is this?”… it’s really embarrassing when it’s someone you’ve known for years and years and you don’t recognise them’.
Participants commonly noted ‘drifting off’ [Adam] during social interaction. Talia said:
People would be talking to me and I’ll get distracted by a car or TV… I could be like ‘Oh look at the colour of that car’, and people would be like ‘you’re not paying attention, are you?’
A few described how thinking difficulties reduced social confidence. Adam shared: ‘I can get my words and that mixed up’, and ‘I get sort of uncomfortable around people quite easily … I can’t really keep a conversation with someone’. Dylan described changes in thinking that led to anxiety about having conversations: ‘There’s always anxiety … I just don’t like lots of thoughts, trying to conversate lots of thoughts’.
Impacts on identity
Feeling ‘stupid’
Frustration and anxiety about the academic impacts of TBI often impacted negatively on participants’ views of themselves. Lauren reported shock in recognising that something about her had changed, and devastation that she might not be intellectually on par with her family:
‘I honestly thought I was stupid … for me it was a shock … I could understand but the information that I was hearing and seeing, like I couldn’t process … the idea my brain wasn’t going to function so well was like, yeah. It got me down quite a lot, cause my whole family is very intellectual, and the thought that I might not be intellectually able with them was devastating!’
Negative self-views led to distress in those who had previously considered themselves competent:
‘I felt really stupid … I thought “well this shouldn’t affect me, maybe it’s just all in my head and I should just get over it”… I was frustrated all the time anyway, angry, didn’t really get sad, just frustration’. [Lauren]
Brandon recalled how his self-view changed as he went from the top of his class to the bottom in new subjects introduced post-injury:
‘Because we didn’t really do science at intermediate … I thought, you know, it’s something I’m bad at … I’d usually been really good at everything at school’.
Feeling self-conscious
A couple of participants felt weird or ‘self-conscious’ [Nick] following their TBIs. For some, this related to the visibility of their injuries:
‘The hardest part was probably… I had to go back to school within a few days, and it’s hard, you’re sitting there and you have like a massive injury to your face and stitches, and like and everyone looks at you quite weirdly and strangely’. [Nick]
Nick described being bullied by school peers, and felt this was not aided by his injuries, whereas Matthew attributed his experience of bullying directly to his changed appearance:
‘I have had a bit of trouble since the injury at school. I was bullied quite a lot from it. … It was mainly about the appearance… the scars’. [Matthew]
Participants’ perceived teenagers as ‘ruthless’ [Ryan] in their responses to changes in their injured peers, and Ryan described a sense of ‘prejudice’ from those around him:
‘Over the years I’ve told people less and less about my head injury … there is always quite a bit of prejudice around like, having a brain injury… people just thinking you’re slower at stuff, and people are less likely to want to be friends with you’.
Loss of social identity
Participants described their injuries altering their perception of themselves in terms of group membership and ‘fitting’ socially. Dylan conveyed how loss of his sports team permanently disrupted his sense of self socially, whilst also impacting an important source of confidence, social recognition and confirmation of who he was:
‘I can remember winning our division four or five years in a row and being the best player on the team. You know, everyone’s excited towards you and then to suddenly having that all ripped away … it’s just like having an open, bleeding wound that no one’s stitching closed … It goes from that feeling of isolation and hopelessness to just anger… It kind of took away, you know, my identity, part of who I viewed myself as, which definitely was a struggle for a long time to re-find something to be passionate about … Your whole world changes in a heartbeat’.
Ethan described how his school performance declined due to memory problems, and he found himself placed amongst a different group of peers:
‘You’re not really up there with the schoolwork. I always failed tests and stuff like that, so you get put down. And then you’re hanging out with people that are down at a lower grade because they don’t care as much … I started hanging out with that group’.
Ryan recounted how his friends moved on without him as he spent years managing fatigue post-injury: ‘My friends obviously like disappeared basically, just cause it’s like who wants to hang out with someone who can’t do much?’ Ryan was one of several participants who viewed themselves as less ‘popular’ post-injury. Talia described how she would go into shops to reduce her sense of social isolation:
‘It’s just the talking to someone, that interaction. Like on shopping day I feel very bad for the shops I go into because like I know I go into a lot of places just to talk to the people’
Being dependent
Many participants felt their injuries reduced their independence. Amy described her initial dependence on family ‘reminding me of the things I needed to do’ post-injury. Whilst this need was usually short-lived, a few participants described ongoing loss of independence. Those who were older at injury spoke more about issues with gaining independence, whilst those injured before the age of 14 did not mention struggles with this.
Participant narratives implied that they developed independence and identity through diverse experiences, making their own decisions, driving and moving out of home.
For Sam, reduced independence was linked to impacts on driving:
‘That was kind of gutting … I couldn’t really transport myself places very easily so I was having to rely on my family and friends … I had to organise rides and that, where usually I’d just go myself, so that part was the worst’.
Ryan stated his injury meant missing out on the things he associated with becoming independent: ‘It was just the age I was, you know I was in high school, going into like University and stuff, and I’m stuck twiddling my thumbs’. At the time of the interview (age 25), he was living with his parents: ‘I didn’t really have many options to be like independent or anything just “cause it was enough of a struggle just to do little things”’.
A few participants described their parents becoming more protective post-injury. Matthew attributed lost independence to parental protectiveness, returning to live with his parents because his father worried about his ability to be self-sufficient. Similarly, Ethan recalled his parents ‘trying to keep hold of me better afterwards’ and ‘trying to keep a bubble around me’.
Discussion
The present study involved thematic analysis of retrospective interviews with young adults about their experiences following TBI sustained during adolescence and their perceptions of how their lives may have been impacted. The analysis identified that participants had felt the impact of their TBI on several important areas of their lives, including on their schooling, career opportunities, work functioning and social interactions. The thematic analysis also highlighted potential impacts on participants’ developing identities, which left them struggling with feeling ‘stupid’, self-conscious, less socially acceptable and more dependent on others during a period in which they had hoped to gain greater independence.
New performance problems at school were common for the participants. Narratives were laden with descriptions of cognitive problems (e.g. zoning out, forgetfulness, difficulty putting thoughts together), and physical issues (e.g. fatigue, migraines), which were linked to deteriorating school performance. These findings add some context to previous evidence of academic impairments following adolescent TBI (Ewing-Cobbs et al., Reference Ewing-Cobbs, Barnes, Fletcher, Levin, Swank and Song2004; Lloyd et al., Reference Lloyd, Wilson, Tenovuo and Saarijärvi2015; Savage et al., Reference Savage, DePompei, Tyler and Lash2005).
The findings also deepen our understanding of longer-term educational and occupational difficulties that have been reported in some individuals who sustained TBI as adolescents, particularly after age 15 (Sariaslan, Sharp, D’Onofrio, Larsson, & Fazel, Reference Sariaslan, Sharp, D’Onofrio, Larsson and Fazel2016). Participants described how persistent thinking problems had affected their transition to new professions as adults, whilst fatigue and/or migraines were barriers for others as they established a career. These patterns suggest that even following mild TBI, young adults experience issues in their employment, which concurs with findings reported in large samples of young adults following mild, moderate or severe child and adolescent TBI (Anderson et al., Reference Anderson, Brown, Newitt and Hoile2009; Todis, Glang, Bullis, Ettel, & Hood, Reference Todis, Glang, Bullis, Ettel and Hood2011). Other findings, such as associations between recurrent (more than one) TBI and poor concentration and slowed thinking 1 month post-injury and work problems years later (Theadom et al., Reference Theadom, Barker-Collo, Jones, Kahan, Te Ao, McPherson and Feigin2017), are consistent with the narratives shared by the participants in this study.
Almost all participants felt left out by peers as they recovered post-injury, which led to frustration, upset and, at times, reduced social confidence and a lost sense of where they ‘fit’ socially. Some completely lost touch with former peer groups as they ceased playing sports, moved classes at school or because friends moved on without them. In addition, changes in thinking made engaging socially more difficult, which led to embarrassment, anxiety, reduced confidence and relationship conflict. Quantitative researchers (Nelson et al., Reference Nelson, Leibenluft, McClure and Pine2005; Rosema et al., Reference Rosema, Crowe and Anderson2012; Ryan et al., Reference Ryan, Genc, Beauchamp, Yeates, Hearps, Catroppa and Silk2018; Yeates et al., Reference Yeates, Bigler, Abildskov, Dennis, Gerhardt, Vannatta and Taylor2014, Reference Yeates, Bigler, Dennis, Gerhardt, Rubin, Stancin and Vannatta2007) tend to emphasise social information processing deficits as the basis for social changes, which is reasonable given the vulnerability of white matter (critical to the increasingly sophisticated social skills developed during adolescence) to TBI-related damage (Andersen, Reference Andersen2003; Henry, Burkhart, Elbin, Agarwal, & Kontos, Reference Henry, Burkhart, Elbin, Agarwal and Kontos2015; Turkstra et al., Reference Turkstra, Williams, Tonks and Frampton2008). However, the current findings indicate that feeling excluded by one’s peers may also play a key role in social changes.
Whilst social changes have emerged from qualitative research regarding adult TBI, they are not generally reported as prominent themes or a source of distress; with emphasis on the impact of complex thinking difficulties, fatigue, irritability and invisibility of TBI on social behaviours, quality of interactions and motivation to engage socially (Lefkovits et al., Reference Lefkovits, Hicks, Downing and Ponsford2020; Levack et al., Reference Levack, Kayes and Fadyl2010; McPherson et al., Reference McPherson, Fadyl, Theadom, Channon, Levack, Starkey and Kayes2018). The current participant reports are more akin to the limited qualitative research available with adolescents (Choudhury et al., Reference Choudhury, Kolstad, Prajapati, Samuel and Yeates2020; Di Battista et al., Reference Di Battista, Godfrey, Soo, Catroppa and Anderson2014; Iadevaia et al., Reference Iadevaia, Roiger and Zwart2015; Mealings & Douglas, Reference Mealings and Douglas2010); which suggest social changes, particularly a changed sense of ‘fitting in’, amongst the most distressing impacts of injury. This difference may be considered in the context of life stage factors, with developmental research highlighting the importance of constant positive connection to peers and a sense of belonging, for preparing a young person for adult relationships, developing a social sense of self and for maintaining overall wellbeing (Baumeister & Leary, Reference Baumeister and Leary1995; Flynn et al., Reference Flynn, Felmlee and Conger2017; Irons & Gilbert, Reference Irons and Gilbert2005; Lodder et al., Reference Lodder, Scholte, Goossens and Verhagen2017; Ragelienė, Reference Ragelienė2016; Roach, Reference Roach2018; Zimmer-Gembeck, Reference Zimmer-Gembeck2015, Reference Zimmer-Gembeck2016).
Participants in this study were highly sensitive to what changes post-injury meant about them (e.g. assumption that school changes meant one must be ‘stupid’). Other authors note that where individuals lack visible signs of TBI, struggles associated with an injury may be misattributed to the person themselves (Krahn, Reference Krahn, Clausen and Levy2015; McClure et al., Reference McClure, Patel and Wade2011). Alternatively, some of the current participants associated visible injuries with an undesirable sense of being strange or different, which has also been observed in adolescents with TBI elsewhere (Gauvin-Lepage & Lefebvre, Reference Gauvin-Lepage and Lefebvre2010; Rødset, Reference Rødset2008). Adolescents with chronic illnesses and disabilities also do not report these to their peers, valuing being perceived as ‘normal’ or ‘just like everyone else’ (Gibson et al., Reference Gibson, Mistry, Smith, Yoshida, Abbott, Lindsay and Hamdani2014; Yates et al., Reference Yates, Bond, Dixon, Drew, Ferguson, Hay and White2010). At a developmental time where one’s assessment of one’s standing amongst peers is a priority (Irons & Gilbert, Reference Irons and Gilbert2005), and where peer rejection can shape developing personality (Zimmer-Gembeck, Reference Zimmer-Gembeck2016), feeling different to one’s peers following TBI might impact social self-perception.
The finding that TBI impacted how participants viewed themselves is not unexpected, given recurring reports of how adult TBI can lead to identity disruption (Beadle et al., Reference Beadle, Ownsworth, Fleming and Shum2016; Lefkovits et al., Reference Lefkovits, Hicks, Downing and Ponsford2020; Levack et al., Reference Levack, Kayes and Fadyl2010; Thomas et al., Reference Thomas, Levack and Taylor2014; Villa et al., Reference V, illa, Causer and Riley2020). While the adult literature emphasises rediscovery of one’s self post-TBI, patterns observed in this study indicate that TBI during adolescence, even mild TBI, may affect or disrupt the process of identity formation. This fits with literature emphasising identity formation as a key task of adolescence (Erikson, Reference Erikson1968; Kroger, Reference Kroger2007; Luyckx et al., Reference Luyckx, Seiffge-Krenke, Schwartz, Goossens, Weets, Hendrieckx and Groven2008; Schwartz et al., Reference Schwartz, Luyckx, Goossens, Beyers, Missotten, Schwartz, Luyckx and Vignoles2011).
Though data were not analysed separately by groups, participants who were older (i.e. aged >15 years) at the time of injury seemed to struggle with the loss, or threatened loss, of existing identities. Considering the concepts of exploration and commitment within the identity status paradigm (Luyckx et al., Reference Luyckx, Goossens, Soenens and Beyers2006), it seemed that those who had already ‘committed’ to a specific identity experienced distress when this identity was no longer available following a TBI. For instance, those participants who were invested in their academic abilities tended to feel the loss of this aspect of themselves in comparison with participants who were, for example, more committed to sporting prowess and felt the loss of their abilities in this area more strongly. Such a range of responses would suggest that a TBI may impact an adolescent differently depending on their prior degree of identity commitment, the degree of perceived disruption to that identity and the permanence of that disruption following injury.
TBI during adolescence might make it more difficult for young people to explore potential identities, particularly as symptoms such as fatigue, migraines or thinking problems prevent a young person from taking part in a multitude of experiences (i.e. ‘trying on’ various identities). Difficulty keeping up with life is a common problem impacting adults’ self-perception post-TBI (McPherson et al., Reference McPherson, Fadyl, Theadom, Channon, Levack, Starkey and Kayes2018; Nochi, Reference Nochi1998; Paterson & Stewart, Reference Paterson and Stewart2002; Theadom et al., Reference Theadom, Rowland, Levack, Starkey, Wilkinson-Meyers and McPherson2016). Sociological literature indicates that the transition to adulthood has become more complex for the current cohort of youth, given sociocultural and political changes in recent decades. The decline of prescribed pathways to adulthood and increased economic precarity has brought about greater pressure on youth to extend their commitments across multiple life domains (e.g. work, study, leisure, relationships, personal development, parenthood) in order to become a ‘successful’ adult (Schwartz et al., Reference Schwartz, Tanner and Sayed2016; Wyn & Woodman, Reference Wyn and Woodman2006). Sustaining a TBI during later adolescence might be especially disruptive to a young person’s ability to engage in these commitments.
The current findings have also shown that TBI may be disruptive to attaining many of the perceived symbols of gaining ‘independence’ (i.e. the primary marker of adulthood in Western societies; Sawyer & Azzopardi, Reference Sawyer and Azzopardi2018), including being able to drive, or living away from home. Previous research has indicated a positive correlation between the severity of a TBI sustained during adolescence and longer time till independent living is attained (Todis et al., Reference Todis, Glang, Bullis, Ettel and Hood2011), which is consistent with the current research. For the current participants, it seemed that perceived parental overprotectiveness also formed a barrier to attaining independence.
Strengths, limitations and future directions
This research adds to the growing body of literature relating to adolescent TBI. By seeking the perspectives of young people themselves, this study offers a unique insight into adolescent experiences and perceived impacts of TBI. Rather than pursuing an objective ‘truth’, this research sought to uncover the range of subjective experiences that might occur for a young person following a TBI. That all participants in the sample had sustained their TBI between the ages of 13 and 17 years and were in their early 20s at interview, and with a similar time period between injury and research participation provides consistency and is a strength of this study. However, the time elapsed between injury and participation also raises challenges in terms of the retrospective nature of the study, the potential for recall bias and the possibility of misattribution of persisting difficulties to TBI, which could potentially reflect intervening life events/issues.
The findings are also limited by selection bias, which inevitably arose due to the nature of the recruitment process. Those who continued in the BIONIC study and who participated in the current study, were possibly more likely to be experiencing enduring difficulties (Davis et al., Reference Davis, Anderson, Babl, Gioia, Giza, Meehan and Zemek2017; Starkey et al., Reference Starkey, Jones, Case, Theadom, Barker-Collo and Feigin2018). The sample may also have been biased towards those with an interest in healthcare and/or those who were highly educated, as most participants were at least working towards third level qualifications. In addition, given the longitudinal nature of the BIONIC research, the sample was affected by attrition. This seemed to account for the low number of minority participants, as retention rates have been reported as significantly lower for ethnic minority groups in longitudinal research on TBI (Sander et al., Reference Sander, Lequerica, Ketchum, Hammond, Gary, Pappadis and Bushnik2018).
Generalisability is not the intention of qualitative research, so much as providing a snapshot of certain common elements of a phenomenon, in order to deepen the overall understanding of that phenomenon. This research sought to capture the perspectives of those young people who were willing to tell their stories, and therefore cannot be taken to represent any single ‘truth’ or the experiences of all young people who sustain an adolescent TBI. In particular, given that the majority of participants had sustained mild TBI, these findings cannot be considered representative of the experiences of youth who endured more severe injuries.
Future Directions
The broad focus of this exploratory study meant that many matters raised by the participants could not be explored in depth. Most significantly, given the centrality of identity formation processes to youth development, it seems imperative that this be further explored through quantitative and/or qualitative research, as has been done within the adult literature (Beadle et al., Reference Beadle, Ownsworth, Fleming and Shum2016; Levack et al., Reference Levack, Kayes and Fadyl2010; Thomas et al., Reference Thomas, Levack and Taylor2014).
Furthermore, more specific investigation into the adult phase after adolescent TBI should prove to be informative. For instance, the current sample included just one parent, who reported an ongoing sense of feeling overwhelmed and exhausted. Unfortunately, one participant is insufficient to identify any parenting-related patterns following adolescent TBI. Further studies should investigate how young adults adjust to new pressures that accompany becoming a parent, particularly in the event of enduring fatigue or memory problems.
Conclusion
This research provides descriptions about changes to important areas of participants’ lives following TBI, largely of mild severity, during adolescence. Overall, this research shows that certain features of the adolescent TBI experience, even following mild injury, may disrupt identity formation and impact upon social development and relationships of young people as they transition into adulthood. Clinically, findings suggest that assistance following adolescent TBI should extend beyond the acute phase and that clinicians should be aware of the broad range of impacts that a TBI might have on a young person’s life.
Acknowledgements
Financial support
This research received no specific grant from any funding agency, commercial or not-for-profit sectors.
Conflicts of interest
None.
Ethical standard
The authors assert that all procedures contributing to this work comply with the ethical standards of the relevant national and institutional committees on human experimentation and with the Helsinki Declaration of 1975, as revised in 2008.
