‘It’s my Concussion Story, and I Want It to Be Heard’: Understanding the Psychology of Concussion Experience

Dr Osman Hassan Ahmed, Dr Eric E. Hall and Dr Caroline J. Ketcham

Sports-related concussion (SRC) is arguably one of the most pressing issues in elite and recreational sport at present, and there has been significant attention paid to the frequency and consequences of this injury in both the academic literature (Alla et al., 2011) and mainstream media (Ahmed & Hall, 2017). In terms of the qualitative literature base related to concussion, there is a comparative lack of published research, suggesting that many concussion stories and experiences may not be 'heard' by the wider scientific community.

This chapter begins with an outline of the impact of SRC, and some of the key factors related to this injury. The importance of athlete experiences related to SRC will be discussed, as well as the role of the media in SRC discourse. An exploration of the effect of SRC on athlete well-being is included, along with its association with factors such as depression and loss of identity. The role of the multidisciplinary team (MDT) in the management of this injury will be outlined, including the role of psychology. The chapter concludes with a concussion- related case study and questions associated with this case study, which it is hoped will help the practitioner when dealing with this injury.

BACKGROUND TO CONCUSSION

Unlike many other common sporting injuries, concussion is seen as an 'invisible injury'. This is due in part to the fact that the diagnosis and subsequent management of SRC is dependent upon an individual reporting their symptoms (alongside any observable signs of the injury which may be witnessed). What constitutes a concussion has been a contentious issue historically (McCrory et al., 2017a), with formal definitions being provided by the Concussion in Sport

Group (CISG). Five summary and agreement/consensus statements have been produced through this process, which commenced in 2001 (Aubry et al., 2002). This process has evolved with the inclusion of major sporting organizations, including the International Olympic Committee Medical Commission, the Federation Internationale de Football Association and the International Ice Hockey Federation. The most contemporary definition of concussion from the 2016 CISG meeting states that concussion is a Traumatic brain injury induced by biomechanical forces' (McCrory et al., 2017b), with this definition giving additional detail relating to the variable, often temporary, and typically functional (rather than structural) nature of this injury.

IMPACT OF CONCUSSION

An oft-quoted statistic is that concussion affects 1.7 million people per year in the USA (Langlois et al., 2006); however, this figure has been suggested as being on the low side with actual figures suggested to be closer to 3 million people per year (Centers for Disease Control and Prevention, 2019). Contact sports such as rugby (Rafferty et al., 2019), ice hockey (Schneider et al., 2018) and soccer (Beaudouin et al., 2019) are all associated with high rates of concussion due to the respective demands of these sports. Other sports, which may not be traditionally viewed as high risk, also have high concussion rates including dancing (Stein et al., 2014) and cheerleading (Shields et al., 2009). In addition, SRC rates have been shown to be high in paralympic sports (Kissick & Webborn, 2018). Recent concussion-related research has identified trends and patterns related to a number of key factors. The importance of sex and gender in relation to SRC has been identified (Mollayeva et al., 2018), with females shown to sustain more concussions than males and have a greater time loss than males (Covassin et al., 2016). Irrespective of gender, the likelihood of having a subsequent SRC having sustained one previously has also been shown by several studies (Daneshvar et al., 2011; O'Brien et al., 2017). In addition, individuals who have experienced a SRC may also be at risk of further musculoskeletal injuries (Herman et al., 2017).

The long-term impact of SRC often focuses on neurodegenerative diseases such as Alzheimer's disease and Chronic Traumatic Encephalography (Sundman et al., 2014). Generally however, the long-lasting effects of a concussion can be seen through changes in both quality of life and sleep (Ahman et al., 2013; Blake et al., 2019; Emanuelson et al., 2003; Kuehl et al., 2010). In the study by Ahman et al. (2013), almost half of the participants still reported fatigue, poor memory, headache, frustration and depression 3 years following a mild traumatic brain injury (mTBI). Some of these participants still reported difficulties 11 years following their mTBI.

Diagnoses of depression and post-traumatic stress disorder are also commonly reported following SRC or mTBI (Cnossen et al., 2017; Levin et al., 2001; Stein et al., 2019). It is also possible that following a concussion with persistent symptoms or with multiple concussions, an athlete may be faced with the decision to retire from sports (Cantu & Register-Mihalik, 2011). The decision to retire from sports can lead to a loss of identity and has been related to retirement difficulties, especially if the retirement is due to injuries (Webb et al., 1998). As such, the role of athletic identity is something that needs to be taken into consideration when retirement occurs (Lavallee et al., 1997).

EMOTIONAL RESPONSES TO CONCUSSION

The integrated model of sport injury and rehabilitation by Wiese-Bjornstal et al. (1998) suggests that personal factors and situational factors will affect any cognitive appraisals following an injury. These cognitive appraisals influence emotional responses to injury, the subsequent behavioural responses and the recovery outcomes from injury. More recently, Wiese-Bjornstal has attempted to adapt this model to include SRC as the injury (Wiese-Bjornstal et al., 2015). The major inclusions in this adaptation came through three main additions: including symptoms in the cognitive, emotional and behavioural responses (because of the intentionality of these along with responses to concussion management); including neurobiological, psychogenic and pathophysiological causes as a mediator between the personal and situational factors to the cognitive symptoms and appraisals; and adding in the importance of postinjury psychological care into the model and how it influences recovery from concussion.

Three recent studies have used qualitative methodology to better examine the lived experiences of athletes who have experienced a concussion (Iadevaia et al., 2015; Moreau et al., 2014; Valovich McLeod et al., 2017). The findings from these studies are fairly consistent, in that they all describe a significant impact in symptoms they experienced. Additionally, these symptoms usually resulted in a significant emotional response, and collectively these experiences caused a change in social relationships. There are a wide variety of signs and symptoms that are often associated with SRC (McCrory et al., 2017b). A recent study by Wasserman et al. (2016) found that the most commonly reported symptoms from SRC include headaches, dizziness and difficulty in concentrating. These primary symptoms may not be labelled as emotional symptoms; however despite the fact that these initial symptoms will typically recover spontaneously in a relatively short period of time, previous studies have suggested that they may lead to a significant emotional response (Iadevaia et al., 2015; Moreau et al., 2014; Valovich McLeod et al., 2017).

Common emotional responses to SRC are frustration and anxiety (Wiese- Bjornstal et al., 2015), which may arise from a number of reasons. One might be that being taken out of sport may have a significant influence on their identity and could lead to feelings of anxiety and depression (Brewer, 1993; Brewer et al., 1993; Sparkes, 1998). The loss of identity for an athlete associated with their injury suggests that there may be some educational implications for those who interact with the injured athlete (Lockhart, 2010). Additionally, Silver (2014) suggests that these feelings of anxiety and frustration are caused by changes in function that occur as a result of SRC and a dysfunctional cognitive feedback loop.

184 Dr Osman Hassan Ahmed, Dr Eric E. Hall and Dr Caroline J. Ketcham CONCUSSION AND SOCIAL RELATIONSHIPS

Symptoms reported following SRC, as well as the subsequent emotional responses, are made even more difficult by the strained social relationships that these athletes may be experiencing (Iadevaia et al., 2015; Moreau et al., 2014; Valovich McLeod et al., 2017). As predicted by the Wiese-Bjornstal (2015) integrated model, social relationships are included in the situational factors that may influence the cognitive symptoms and appraisals, via psychogenic causes and subsequent emotional responses.

In these studies, athletes often report that social relationships might also influence future behavioural responses, such that they will often report that they 'don't want to let their teammates down' or 'can't contribute to the team' (Valovich McLeod et al., 2017). In addition to the pressure the athletes are placing on themselves, they also experience pressure from coaches, teammates, parents and fans. A recent study found that more than a quarter of participants (college athletes) reported experiencing pressure to continue playing from at least one source (i.e. coaches, teammates, parents and fans) after sustaining an impact to the head (Kroshus et al., 2015). If an athlete reported feeling pressure from all four sources, they were more likely to continue playing. It is not surprising that this pressure placed upon themselves and by others may provoke additional anxiety and frustration and prolong their recovery from concussion.

PSYCHOSOCIAL INTERVENTIONS FOR CONCUSSION

The integrated model of sport injury and rehabilitation adequately captures these experiences of the concussed athlete and provides areas where psychosocial interventions may be relevant (Wiese-Bjornstal et al., 2015). A recent targeted review has suggested that there is an anxiety/mood clinical profile of SRC (Sandel et al., 2017). This clinical profile is one of six that have been suggested as being experienced by an individual who has a concussion, and this review article suggests four forms of targeted treatment that may be useful for this type of concussion (psychoeducation, behavioural regulation, desensitization to environmental stimuli and psychotherapy). Psychoeducation is a common intervention for the management of SRC and provides informational support about the expected signs and symptoms of a concussion to an individual. Common components of such programs include clinicians setting a positive expectation for recovery, descriptions of the pathophysiology of concussion, description of the common signs and symptoms of a concussion and potential strategies to help reduce symptoms (Cooper et al., 2015).

In regard to behavioural regulation, Sandel et al. (2017) suggest that implementing good sleep hygiene and physical activity may be useful behaviours to focus on in order to help mitigate symptoms. Sleep alterations are a common symptom following a concussion; therefore, any intervention to help regulate these symptoms would be beneficial for recovery. Similarly, physical activity has been shown to have an impact on emotions, sleep, cognition and numerous physiological changes (Biddle, 2016) that could be beneficial from concussion recovery. If there are environments that are anxiety provoking for those with a concussion, desensitization through exposure may be a method to help them deal with these anxiety symptoms and aid their recovery If anxiety and mood are persistent issues following SRC, then psychotherapy is suggested as a possible approach. This may include cognitive behavioural therapy, techniques to improve mindfulness, implementing adaptive coping strategies and potentially pharmacologic interventions.

Based on the social pressures experienced, it may also be important to provide appropriate social support for those suffering from concussion. The work of Covassin et al. (2014) indicated that those who reported having higher levels of social support experienced less anxiety following SRC. The provision of informational and emotional support from parents, coaches and sports medicine staff have been stated as important components in assisting concussion recovery (Andre-Morin et al., 2017). A recent study found that this emotional support was related to more positive psychosocial reactions and intentions to report future concussion symptoms (Wayment & Huffman, 2019), reinforcing the importance that emotional support can have in the recovery following SRC. Additionally, informational support by physicians and athletic trainers/physiotherapists has been found to be important in the recovery process from concussions (Andre- Morin et al., 2017).

EFFECT OF THE MEDIA ON SHAPING CONCUSSION EXPERIENCES

Given the impact that concussion has had on sport and those individuals playing it, it is unsurprising that the mainstream media has reported extensively on high-profile concussive injuries. As a consequence, the potential exists for individuals who have experienced SRC to have their attitudes, opinions and potentially their management of concussion shaped by what they encounter online, in print or in other forms of media. This is of concern, as several studies have highlighted inaccuracies and inconsistencies in the reporting of SRC in the mainstream media. Ahmed and Hall (2017) evaluated 153 online news articles and found that almost 10% of all articles contained terminology which could downplay the seriousness of the injury As a consequence of this, an associated editorial by the same authors made recommendations for journalists in order to help disseminate concussion-related stories in a more accurate manner (Ahmed et al., 2016).

The effect of the media on individuals assessing and managing concussion has also been noted. Martin et al. (2018) explored the effect of television consumption and internet use on the attitudes of Athletic Training students towards SRC. Those Athletic Training students who consumed more internet per day felt that the reporting of concussion accurately educates the public, whereas students who consumed more television per day were more likely to disagree that this positively educates the public about concussion. As Athletic Trainers are often central to the assessment and management of SRC, then the effect of the media on their perceptions of concussion is important to understand.

One of the ways that the media has also impacted upon the public's perception of SRC is in the sharing of emotive stories related to high-profile persons who have experienced an injury. McGannon et al. (2013) used ethnographic content analysis to examine the media discourse regarding the concussion of Sidney Crosby (a star ice hockey player from Canada). From the 68 included articles in the study, the central narrative which emerged was that this concussive injury arose from the culture of risk through sport and the subsequent impact of this risk upon athletes. In an unrelated editorial, Kuhn et al. (2017) also outlined some of the challenges to the media reporting of SRC. These authors highlighted that 'highly publicised and emotionally-charged events' from the media are likely to supersede the public's perception of concussion, over and above any knowledge based on empirical data.

MANAGEMENT OF CONCUSSION

The management of concussion has evolved as researchers know more about the recovery process and the impact on athletes physically, cognitively and emotionally. The most recent recommendations for the management of concussion are to integrate an active rehabilitation model, while monitoring symptom load in an effort to ease athlete and clinician frustration and improve recovery (Leddy et al., 2019; McCrory et al., 2017b; Schneider et al., 2017; Thomas et al., 2015). While this is progress from the previous recommendation of restricted cognitive and physical activity until symptoms subside (McCrory et al., 2013), there is still limited evidence on the specifics to be implemented via this approach. Researchers have therefore shown a keen interest in how much activity to engage in, the specificity of activities and the impact of activity on symptoms, recovery and overall well-being (Leddy et al., 2019; Register-Mihalek et al., 2019). Athletes who sustain an injury are typically recommended rest for 24-48 h and then symptoms are monitored until they subside at which point they engage in a graded exertion protocol. With an active rehabilitation model, during the symptom monitor phase, activity is added at levels that do not increase symptoms and may target symptoms specifically. Engaging athletes in activity and monitoring symptoms has been shown to improve the psychological burden as they are doing something to recover and not increase the typical 7-14-day return to play timeline (Thomas et al., 2015). Researchers are trying to better understand if active rehabilitation changes the overall trajectory of recovery and more importantly improve athletes' psychological well-being.

In addition to the 'what' of concussion management, the 'who' is also important. Athletes work with a MDT and as a concussive injury affects individuals differently, a team of professionals can be instrumental in the recovery process. Typical professionals include the sports medicine staff (physician, athletic trainer, physiotherapists) but may also include other medical professionals (school nurse, family medicine clinicians) and these professionals are usually involved in the standard concussion management team. In addition, many institutions may also include others on the MDT such as mental health professionals (neuropsychologist, sport psychologist) and return to learn or work supports (teacher, speech pathologist, occupational therapist, resource teams, social worker) (Ahmed et al., 2017; Ketcham et al., 2017). While these professionals are usually not incorporated into the MDT unless an athlete has protracted recovery or ongoing symptoms, they may be beneficial earlier in the recovery process even if primarily in an advisory or peripheral support role. There may be value highlighting emotional and cognitive challenges many athletes face in an effort to normalize the complexity of concussion recovery. Athletes who are also students may find that learning is very different in the short term and so providing tips for the classroom may allow them to increase cognitive load (Ketcham et al., 2017). Although every athlete might not need all these resources depending on their recovery, having a MDT in place and accessible to athletes may reduce the frustration of their injury, provide comprehensive and holistic care, and support athlete well-being.

Case study: 'It’s my concussion story, and i want it to be heard'

Alexa, a 20-year-old collegiate softball student-athlete, sustained an impact to the head when she dove for a ball in the outfield and hit the wall at her Friday afternoon game. She immediately felt symptoms of dizziness and a headache, and her Athletic Trainer removed her from play. She was advised to 'take it easy' in the following days (both physically and cognitively), and her symptoms were monitored and post-concussion testing scheduled for 48 h later. Alexa's symptoms continued, her neurocognitive performance score was significantly lower than her baseline and the sports medicine physician diagnosed her with a concussion. Instructions to Alexa were to continue to monitor her own cognitive and physical activity, and to limit both of these if her symptoms increased.

Alexa was a high-achieving athlete and student. She was majoring in Public Health and was taking pre-med prerequisites, so missing class and labs gave her great anxiety. She already had to work hard to make up work for missed classes due to travel, but it was even more deflating to her as she now had to miss more classes due to her concussion. It was one of the final few series before her regionals and she hated missing practice and events with her team. She would get dizzy and her head would pound when she would try to attend practice or film sessions. The noise, lights and lots of moving people were too much. Alexa felt more sadness, anxiety and mental fogginess over the next several days. Every time she tried to read books or online material for her courses, her symptoms would increase and she would be unable to remember what she had read.

Her partner Sam was frustrated that she was unable to go out to dinner and hang out with their friends. Alexa had a much shorter temper and would cry much more easily than she would do normally. The arguments between Alexa and Sam seemed constant, and Sam seemed to blame Alexa for this escalation. Everything seemed to be falling apart. After 2 weeks, Alexa's symptoms were improving and she was able to increase physical and cognitive load without her symptoms increasing, but she felt behind in everything. Her teammates were bonding with the 2nd place finish in conference, and with the next games on the horizon, they were working incredibly well together as a team. Alexa was told by her Athletic Trainer and coaches that she could travel, but as part of the return-to-play protocol, she would not be able to play in competition yet.

Although Alexa passed all of her neurocognitive tests and her symptoms had stabilized or were absent, she still did not feel Tike herself' and she struggled to be able to explain this to others or indeed understand this herself. School work was continuing to take longer and she just 'didn't feel sharp'. Sam, her teammates and her friends were clearly annoyed Alexa wasn't as outgoing as usual, and Alexa was frustrated as she did not feel like joining in. As the season ended and summer came, Alexa was cleared to return to full activities and was 'recovered' by all measures and metrics. She felt better, but not completely herself, and she was pretty upset that her course grades were slightly lower than she was used to (or had hoped for). She entered the summer with mixed emotions; both ready for a break, but simultaneously worried about returning in the fall.

• 1. What are some additional resources or supports that would have benefited Alexa during this process?
• 2. Is the Alexa that headed into summer the new baseline for her?
• 3. Is Alexa's general sadness and anxiety something that should be followed up or typical for a student-athlete who has had a set-back in both?
• 4. This is Alexa's 3rd diagnosed concussion and she is a rising senior. Should sports medicine staff talk to her about retiring from her sport?

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