Experiences of Children and Youth With Concussion: A Qualitative Study

Abstract

Importance: Concussions are common among children and youth. To date, the pediatric concussion literature has focused on quantitative reports of the effects of concussion and return-to-activity guidelines. However, the subjective experiences of children and youth returning to occupations postconcussion have largely been ignored. An understanding of these experiences is critical to inform effective concussion management.

Objective: To investigate the experiences of children and youth returning to occupations after sustaining a concussion and the impacts on their future engagement in occupation.

Design: Qualitative interpretive description was used for data analysis and interpretation.

Setting: Community.

Participants: Children and youth ages 11 to 18 yr from a cohort study were recruited to be interviewed about their experiences of engaging in occupations postconcussion.

Outcomes and Measures: Interviews were conducted 3 to 24 mo postconcussion, transcribed verbatim, and analyzed using interpretive description to identify themes.

Results: Eight children and youth (5 male, 3 female) were included. Analyses revealed three themes of the experiences of children and youth returning to occupations after concussion: diverse experiences of concussion, knowledge is key to concussion management, and concussions affect occupational engagement.

Conclusions and Relevance: This study highlights the importance of considering a person’s needs to enable effective concussion treatment plans. The results suggest the need for an occupation-based framework to guide interventions in pediatric concussion management.

What This Article Adds: Our findings indicate that children and youth report variable recovery patterns, a lack of knowledge about concussion recovery, and a negative effect of concussion on occupational engagement.

Precis (for TOC): The findings of this study highlight the importance of considering the subjective experiences of children and youth returning to occupations postconcussion and the need for an occupation-based framework to guide interventions in effective pediatric concussion management.

Concussion, also termed mild traumatic brain injury, is a type of injury defined as “a bump, blow, or jolt to the head or a hit to the body that causes the head and brain to move rapidly back and forth” (Centers for Disease Control and Prevention, 2017, para. 1). Concussions are particularly common among the pediatric population (Marshall et al., 2015), with an estimated 33 million children worldwide sustaining a concussion annually (Davis et al., 2017).

After sustaining a concussion, people may experience a wide range of symptoms in the domains of physical capacity, cognitive function, or emotional status (Yeates, 2010) that can be transient or persistent (McCrory et al., 2017). A person may experience any combination of headaches, nausea, fatigue, dizziness, problems with balance and vision, sensitivity to light and sound, difficulty concentrating, memory problems, slow cognitive processing, irritability, and disinhibition (Iadevaia et al., 2015; Marshall et al., 2015; McNeal & Selekmen, 2017; Purcell et al., 2019; Santiago, 2016; Vassilyadi et al., 2015). For many children, symptoms resolve within 1 mo postinjury; however, 11% to 55% of children experience a prolonged recovery that lasts longer than 4 wk (Davis et al., 2017). The neurobiological underpinnings of symptom expression are still poorly understood (Schmidt et al., 2018).

Pediatric concussion guidelines and recommendations aim to prevent further injury and facilitate recovery (Ontario Neurotrauma Foundation, 2014), with recommendations of 1 to 2 days of physical and cognitive rest immediately postinjury, followed by a gradual return to physical and cognitive activities (Connell, 2017 ; Davis et al., 2017; Marshall et al., 2015; McCrory et al., 2017). However, large variability exists in how and when concussions are managed, and concussion recovery knowledge among medical professionals is inconsistent (Salisbury et al., 2017). Overall, no agreement exists on the definition or prescription of physical and cognitive rest for children and youth (McCrory et al., 2017; O’Neill et al., 2017). Currently, implementation of guidelines is lacking, and the research on which to base concussion policies is limited (Connell, 2017; O’Neill et al., 2017; Purcell et al., 2019).

Most recovery guidelines describe methods to return to activity. However, throughout this article, we use the concept of occupation rather than activity because it is a broader concept that not only encompasses activity but also extends beyond to include all things people do to occupy their time (Canadian Association of Occupational Therapists [CAOT], 2002). For example, occupations are activities that a person does each day, such as activities to take care of oneself (self-care), work or school activities (productivity), and activities that occupy one’s free time (leisure; CAOT, 2002). Occupations include not only attending school and playing sports but also socializing with friends and spending time reading or playing video games. The term occupation more thoroughly represents the wide variety of activities that children and youth do throughout their day.

Symptoms resulting from a concussion can significantly affect the engagement of children and youth in various occupations, including academic, social, and behavioral demands (Connell, 2017). Engagement in school occupations is commonly disrupted by concussion symptoms and is frequently described in the literature (Baker et al., 2015; Iadevaia et al., 2015; O’Neill et al., 2017; Ransom et al., 2016). For example, students who experienced prolonged concussion symptoms were absent from school more often, which affected their occupations at school (e.g., learning, playing) and overall activity participation (Grubenhoff et al., 2015; Purcell et al., 2019; Rozbacher et al., 2017). However, research in the area of returning to occupations outside of school is limited. Moran et al. (2012) found that children experiencing symptoms after sustaining a concussion may not participate in as many social or other rewarding occupations. Overall, concussion can change children’s ability to engage in a variety of occupations (Baker et al., 2015; Connell, 2017; Iadevaia et al., 2015).

Prolonged concussion symptoms and consequent activity limitations can affect emotional control, influence academic and social roles (Valovich McLeod et al., 2017), and disrupt self-perception (Sveen et al., 2016). Although the literature on interventions to promote effective return to activity after concussion is growing (DeMatteo et al., 2020), the literature examining the subjective experience of sustaining a concussion and the consequent recovery process among children and youth is limited.

The personal perspective of children and youth is necessary to understand their subjective experience of return to occupation, which may then contribute to more effective implementation of guidelines, successful intervention approaches, and improved service delivery. For example, among other pediatric populations, such as children with cerebral palsy, subjective experience of a condition leads to better health outcomes through effective delivery of interventions (Rezaie & Kendi, 2020). In particular, qualitative paradigms provide deep knowledge about people’s experience that can translate into effective and meaningful clinical care.

The purpose of this study was to explore the subjective experiences of children and youth engaging in diverse occupations after concussion. Our specific objectives were (1) to explore the experiences of engaging in academic occupations at school (e.g., English and math), nonacademic occupations at school (e.g., socializing and lunch breaks), and occupations outside of school (e.g., playing sports and video games), and (2) to describe whether and how occupational engagement changes after one sustains a concussion.

Method

Design

In this qualitative study, we collected information from children and youth using semistructured interviews and used interpretive description methodology for data analysis and interpretation (Thorne, 2016). This inductive approach enables exploration of a phenomenon to inform clinical understanding. Semistructured interviews and data analysis were completed by two graduate student researchers (Emily Moen and Alison McLean) trained in qualitative research and supervised by an experienced research team. This study was approved by the Behavioral Research Ethics Board of the University of British Columbia.

Participants

A convenience sample of participants was recruited by email invitation from a group of children and youth who participated in another study of concussion, the Study of Neurophysiology in Childhood Concussion (SONICC; University of British Columbia Brain Behaviour Laboratory, 2019). Participants were children and youth ages 11 to 19 yr, fluent in English, and diagnosed with a concussion or meeting the American Congress of Rehabilitation Medicine criteria for concussion (American Congress of Rehabilitation Medicine, Head Injury Interdisciplinary Special Interest Group, Mild Traumatic Brain Injury Committee, 1993). As per the SONICC exclusion criteria, participants did not have a psychiatric diagnosis, take drugs, or have another diagnosed brain problem. Interviews were then scheduled with assenting children and youth whose parents also gave consent.

Of the 17 SONICC study participants, 8 children and youth (ages 11–18 yr) consented to be part of this study (Table 1). Participants were interviewed 3 to 24 mo postconcussion and were given a pseudonym to ensure confidentiality. All participants (5 male, 3 female) had sustained a sports-related concussion. None of the participants had been involved in a structured rehabilitation program (e.g., occupational therapy) since their concussion.

Table 1.

Participant Characteristics

Pseudonym	Age at Interview (yr)	Sex	Cause of Concussion	Time Since Most Recent Concussion (mo)
Alejandro	18	Male	Sport	24
Ben	16	Male	Sport	5
Dan	16	Male	Sport	24
Georgia	17	Female	Sport	11
John	14	Male	Sport	11
Amy	16	Female	Sport	24
Sally	14	Female	Sport	10
Von	11	Male	Sport	3

Procedure

Interviews were conducted by two Master of Occupational Therapy students (Moen and McLean) who had been trained to conduct qualitative interviews. They used a semistructured interview guide that was designed with open-ended, nonleading questions to encourage detailed, thoughtful answers. Question topics focused on the postconcussion experiences of children and youth regarding concussion diagnosis and management and their return to occupations at school (academic and nonacademic) and outside of school. A review of recent literature was used to inform the development of interview questions (Baker et al., 2015; Todd et al., 2018; Valovich McLeod et al., 2017). Examples of questions from the interview guide are “What were your feelings right after having your concussion, if any?” “How were your initial days back at school different after you had your concussion, if at all?” and “How will having a concussion change the activities you choose to do, if at all?” The interviewers used prompts as required to provide participants with more information and focus in their response.

Interviews were held individually in a private meeting room at the University of British Columbia between January 2019 and May 2019, on dates and at times that were convenient for the participants. Each interview lasted 30 to 45 min, and all interviews were recorded using an audio recorder.

Data Analysis

Data analysis was conducted using interpretive description methodology (Thorne, 2016). Data collection and data analysis were completed concurrently to ensure constant comparison of the preliminary coding scheme with the primary data to ensure accurate representation.

Data from the interviews were coded using a broad coding scheme that identified different categories in the data. First, Moen and McLean transcribed each recorded interview verbatim into an electronic document. Each electronic interview transcript was then analyzed line by line, and each line was given a code based on the properties of the data it held. The interviewers’ reflective notes were also used to inform the coding of each line of the interview transcripts to more accurately represent the experiences of children and youth with concussion. As new data were collected, the coding scheme was revised. Interviewers also completed reflective notes about the codes and their relationships to facilitate understanding and organization of the data, as well as for trustworthiness.

To ensure trustworthiness of research, each interviewer engaged in reflexivity by maintaining their own notes to record their impressions, interpretations, and self-reflection throughout the data collection process. For researcher triangulation, three authors (Moen, McLean, and Julia Schmidt) coded the first interview independently. These codes were then compared and were found to be similar. Two authors (Moen and McLean) then coded the next two interviews independently, and these codes were comparable. The remaining interviews were then coded by one author (Moen or McLean).

Finally, through collaborative discussions with the other authors, three main themes of experiences emerged from these codes. These themes create an interpretive description of the experiences of children and youth with concussion that can be used to inform clinical practice.

Results

Three themes were identified: (1) diverse experiences of concussion, (2) knowledge is key to concussion management, and (3) concussions affect occupational engagement.

Theme 1: Diverse Experiences of Concussion

This theme demonstrates the diverse experiences of each participant in relation to their concussion symptoms and recovery. As outlined in detail, participants described differences in the types and duration of symptoms. They noted various emotional reactions to sustaining a concussion, contexts of recovery, and support received from those around them.

With respect to the symptoms experienced after concussion, each participant’s presentation of symptoms was unique. Many participants reported having symptoms such as headache, difficulty focusing, and light sensitivity. Whereas John reported, “[The concussion] made my very severe anxiety . . . much, much worse. And my usually nonexistent or mild depression into very severe,” Ben, who had experienced multiple concussions, reported that memory loss was his most challenging symptom. Sally experienced lability in mood:

I got mad kind of easily. I got sad . . . . I felt weird things. Like watching a show I would not normally cry [at], I was crying. But I wasn’t really sad, just kind of having a reaction.

This variability was emphasized in the interview with Georgia, who had experienced two concussions:

[After the first concussion], I just felt kind of all weird and kind of disconnected, almost, from my body. It felt like my head and my legs were two different things. . . . The second one, I had a bit of blurry vision . . . and everyone had to speak softly, and light was a bit of a factor.

The duration of symptoms also varied among participants, with symptoms lasting from 2 days to up to 2 yr. For example, both Amy and Alejandro experienced similar concussion symptoms; however, Alejandro’s symptoms lasted 3 mo, whereas Amy’s persisted for 2 yr.

Participants identified a variety of initial emotional responses to sustaining a concussion. Many participants experienced feeling confused, frustrated, or worried. In contrast, Alejandro described an apathetic response and stated, “I wasn’t really feeling any specific emotion. I was just kind of, ‘Aww, this sucks, but whatever.’ I wasn’t really mad or sad or anything.”

Each participant also had a unique context of recovery that influenced their concussion experience. Some participants sustained their concussion during a vacation or at the end of a sports season, which created a natural break for recovery. John explained, “I had the entirety of spring break to recover and by the time that I came back. . . . I had made [a] significant recovery.” Georgia also experienced a natural ending to school demands: “Chemistry was dying down and so was math, so it didn’t really matter to me.” Other participants were in the middle of various ongoing occupations and had to take breaks. For example, Amy did not take a break from school but took a break from her sports. However, Von chose to take a break from school and sports: “I just went back when I knew I was fully feeling better.”

Participants expressed differences in the amount and content of support provided by their schoolteachers, peers, and coaches, which influenced their experience of concussion. Ben commented, “Teachers and other students [took] more precautions with what happen[ed] in the classroom, making sure I [didn’t] get hit in the head and making sure I [understood] everything. So the whole class [went] slower.” Von had support from teachers and coaches who routinely checked in with him: “They just were really on my side about it, and they just really didn’t want me to get hurt even more.” Other participants did not receive the same support. For example, Amy described having a challenging time when her coach would ask each season if she was returning to rugby and Amy had to say no. Georgia, who sustained two separate concussions, experienced variability in support from the same people. After her first concussion, she reported, “I had a lot of people coming up and offering assistance . . . so they were quite nice about that.” After her second concussion, however, she explained that people were still kind but had an attitude of “Ahh, whatever, she can take care of herself.”

Theme 2: Knowledge Is Key to Concussion Management

Participants reported that they and their support network, such as parents, teachers, and coaches, had varying amounts of knowledge about concussion, which affected the concussion recovery experience. Knowledge of concussion management came from previous concussion experience and from medical recommendations and guidelines. Participants described how a lack of past knowledge, as well as inconsistent medical recommendations and guidelines, had a negative effect on concussion management. In contrast, more knowledge contributed to a more positive experience of concussion.

First, lack of knowledge about concussion diagnosis and management had an impact on the timeliness of diagnosis. Many participants shared that they and their families, teachers, and coaches had little knowledge, which affected whether they thought they had sustained a concussion. For example, Von shared his uncertainty: “When I [had] just gotten hit, I didn’t know I had one [a concussion], and unfortunately, I kept playing the rest of the game, which might have made it a bit worse.” Ben reported, “When I had my first concussion, not many people knew what was going on. I just wish I knew that I shouldn’t [have been] going to school because it just delayed the amount of recovery time I had.” Further illustrating the lack of concussion knowledge, Dan explained,

After the second day [when the symptoms started], my parents and me decided to go get it checked out. We weren’t really sure what was going on. . . . I didn’t realize I was concussed, and I wasn’t actually aware fully of what a concussion was, so it never came to mind that I could be concussed.

Participants reported receiving inconsistent concussion recovery recommendations and guidelines from medical professionals, in both method of delivery and content. Medical guidelines were given as verbal instructions, pamphlets, or both. For example, Sally and Amy received advice verbally and written in a pamphlet, whereas Dan received only verbal recommendations. However, Von shared that he received a sheet of paper listing precautions to follow. Georgia and Alejandro also spoke to the variability in medical advice content. Alejandro reported that the emergency room physician informed him that he could continue to engage with screens (e.g., mobile phone); however, after an earlier concussion, his family doctor had told him to avoid screens. Georgia also received different, at some points contradictory, medical recommendations for each concussion:

The first time it was a lot less information. I don’t know, it felt kind of weird. . . . The second one at the hospital, he gave me like five sheets of paper and, like, return to play, and all these different things that I got that I guess were helpful.

Participants also shared their reactions to receiving recommendations and guidelines through a pamphlet. For example, Alejandro had a negative view about getting pamphlet guidelines: “Pamphlets are kind of like, impersonal. . . . I’d rather be treated like a person rather than just another number.” John also described his negative experience of receiving medical advice: “I basically just got this pamphlet. I hated . . . this pamphlet. . . . [It] basically just said what I could and couldn’t do.”

Variability in the information provided led to missing medical advice. Some participants shared that they did not receive necessary recommendations. For example, John experienced auditory sensitivity symptoms postconcussion. He shared, “Something that the pamphlets really glossed over, and something that I would like to be more covered, is auditory issues.” When asked about information he was given about concussion, Ben reported, “They didn’t really give me information about it.”

Participants also reported following medical recommendations and guidelines to different extents because they did not always apply to their specific contexts. John shared that he did not follow certain guidelines because they were not an issue for him: “I’m going back to screens 2 days after my concussion and no one can stop me. . . . When I did, there [were] no issues. That wasn’t a problem for me.” Context influenced Georgia; she received recommendations to stay off electronic devices, but she felt that she could not follow the recommendation because she had many essays for school to complete.

Overall, the inconsistency in concussion knowledge can have a negative affect on concussion management. This is exemplified by Ben: “My parents weren’t too sure what to do, the doctors weren’t sure, so I just went to school. And I just dealt with it through painkillers.”

Alternatively, having concussion knowledge facilitated a positive experience. For example, Sally explained that her father’s concussion knowledge gained through his experience in football was helpful. Georgia also reported that she felt her recovery from the first concussion took longer because she was not sure how to manage it; however, she felt much more prepared for the second concussion:

My second concussion was fine. I had all the advice I felt I needed, and I was able to get back to playing hockey and back to normal life I guess a lot quicker. I wish I had had more decisive people in my life on my first concussion instead of letting me go 4 days kind of just wondering, being like, “My head hurts. What do I do?”

Both Sally and Georgia also received more thorough, relevant medical advice. For example, Sally reported that she was given a step-by-step pamphlet for returning to activity. She explained, “[The nurse at the hospital] was really helpful.” Georgia described that the information she received for her second concussion was helpful and that she received more recommendations in pamphlets detailing a return to activity.

Theme 3: Concussions Affect Occupational Engagement

Experiences of concussion affected how participants engaged in occupation or in which occupations they engaged, both during recovery and after symptoms had subsided. Sustaining a concussion also had various impacts on the participants’ self-perceptions, stemming from the disruption in occupational engagement.

After sustaining a concussion, participants shared how their symptoms influenced changes in how they engaged in their occupations during recovery. School was a primary occupation for the participants, and many described how their symptoms disrupted their return to school. For example, Amy and John both described how their return to school exacerbated their concussion symptoms, such as headaches and difficulty focusing. Some participants reported having to leave school on their initial days back. Sally detailed how, when she returned to school, she felt nauseated and had to return home that afternoon. Von described his return to school: “The lights in my school are really bright and then that started to hurt my eyes, and then I had to go home like an hour after I got there, and so that didn't really work out.” Participants also reported impacts on other occupations. For example, John reported, “Social interaction was definitely . . . something I avoided doing because I [knew] it would be painful from the little that I did.” Dan’s occupations also changed during recovery: “I biked every day [before the concussion] so I had to lay off of that. . . . [Biking] was impacted the most.”

Many participants reported that their experience of concussion influenced how they engaged in occupations because of concern about reinjury. Most participants reported that they felt more concerned about hitting their head and approached their occupations with more caution. For example, Georgia and Sally both approached sports more cautiously postconcussion. Amy also shared,

It’s really kind of scary if you’ve hit your head again ’cause you worry like, “Oh my God, am I going to get another concussion?” It makes me really concerned about hitting my head again, and how it will affect my memory and like, my ability to focus.

However, some participants reported less of an impact. For example, Alejandro reported,

I don’t really want to get another one. It wouldn’t be ideal, but I’m not going to just like live my life super cautiously. I’m just going to, you know, do the same stuff and hope not to get tripped in soccer.

For some participants, their experience of concussion influenced not only how they participated in occupations during their symptomatic period but also the type of occupations they participated in after symptom resolution. Most participants described engaging in sporting occupations before their concussion. Some participants described choosing to stop participating in previously meaningful occupations. Dan also chose to leave his sports team after missing too much while he was recovering from his concussion.

Amy described her experience as follows:

I’d just gotten my black belt [in martial arts] actually so I was kind of at the peak, and I just had to stop right there and kind of never got back to where I was. . . . I’m not doing [martial arts] anymore.

Many participants changed their occupations out of concern about reinjury. For example, John shared,

I’m deciding if I’m going to at least temporarily quit [my sport] when I go to college because I can’t take another 2 months’ leave from college in the middle of a semester. So, it’s definitely going to influence the choices that I make.

Amy also reported, “I used to not really care about anything, but now I’m a little more reserved about the activities that I’m doing.” Ben captured this concept in relation to his experience:

Since I had the concussions, I’ve had to drop most [sports]. . . . It was a hard decision to make. Since I have been playing sports for over a decade . . . I had to realize that what I’m giving up is better for my health and for my future. And if it keeps on going on I’m going to get more concussions or have the risk of it so I can’t be doing that to myself at this time. . . . It makes me more cautious about everything I do now. . . . I just make my decisions based on if it’s going to affect me and my brain.

Many participants experienced disruptions in their leisure and school occupations in some form, so their concussion also had various impacts on their self-perception. Although most participants reported that they did not feel their self-perception had changed, this was not all participants’ experience. For example, Alejandro’s concussion had a neutral impact on his self-perception: “I just added another thing to my list of experiences, but I don’t think it actually changed me as a person.” However, Amy reported, “I was never really able to get back into [martial arts] because what I loved about it was the sparring aspect. But I couldn’t really do that anymore. So that really kind of changed my life quite a bit.” Ben noticed a change in his peers’ perception of who he was: “They tend to think of me as the kid who has had more concussions than most people have ever had. That’s what I’m more known as compared to other stuff I’ve done before.” Finally, John found a positive shift in self-perception with regard to his preexisting depression and anxiety. He shared,

It initially exacerbated [the mental health issues], but eventually helped really bring it out of that place. . . . The time to rest and really reflect on who I was as a person . . . has really made [me] a better person and pulled [me] out of that dark place.

Discussion

This study enhances the existing pediatric concussion literature by addressing the subjective experiences of children and youth engaging in diverse occupations after concussion. The results are consistent with those of current research, with additional important findings that have implications for occupational therapy practice.

The first theme highlighted the participants’ diverse experiences of concussion and illustrated the wide variability in all facets of the concussion experience. The diverse experience of symptoms is strongly supported by recent literature, which shows that symptoms are known to be variable (Iadevaia et al., 2015; Marshall et al., 2015; McNeal & Selekmen, 2017; Purcell et al., 2019; Santiago, 2016; Vassilyadi et al., 2015; Yeates, 2010). Moreover, the diverse duration of symptoms experienced by participants in this study is also consistent with current research (Davis et al., 2017; McCrory et al., 2017). However, the participants’ subjective experiences go beyond variability in symptoms and duration. Variability was also described in emotional reactions to concussion, the context of recovery, and supports given during recovery. These crucial pieces are not as prominent in the current pediatric concussion literature.

Participants’ diverse experiences demonstrate the apparent need for individualized, client-centered care. Client-centered care, also known as person-centered care or patient-centered care, emphasizes the client as an active participant in their own care, and health care professionals support and educate clients to make their own health care decisions (World Health Organization, 2015). This approach recognizes the client’s experience and knowledge of their own health and in their specific context (CAOT, 2002). Individualized, client-centered care would allow health care professionals to tailor recovery guidelines to more effectively address the individual needs of children and youth postconcussion.

Concussion knowledge also played a role in participants’ experiences, as highlighted in the second theme. Our findings suggest that different levels of concussion knowledge exist in a variety of contexts, such as in social networks and in medical recommendations. In this study, inconsistent knowledge had a negative effect on the experience of concussion, such as delayed diagnosis and inconsistent medical recommendations. Currently, the literature shows that concussion knowledge gaps exist in many contexts. A recent study by Salisbury et al. (2017) demonstrated that medical professionals’ knowledge pertaining to concussion management and recovery among youth is variable. This gap is also seen in schools, where no formal guidelines exist, and the information available from which concussion policies can be implemented is limited (Connell, 2017; O’Neill et al., 2017 ; Purcell et al., 2019). Overall, guidelines have general recommendations, but inconsistencies and disagreements on recommendations for children and youth still exist (McCrory et al., 2017; O’Neill et al., 2017).

The participants’ experiences with knowledge inconsistencies demonstrate the importance of tailoring treatment to the individual to ensure they receive the necessary medical advice. Both participants’ experiences and the recent literature demonstrate the need for more concussion information applicable to a variety of contexts, including communities, schools, sports, and health care. This knowledge would provide a foundation for delivery of more effective client-centered care and individualized medical recommendations.

Consistent with previous research (Baker et al., 2015 ; Connell, 2017; Iadevaia et al., 2015), participants reported that their experience of concussion had a direct impact on their occupational engagement during and after recovery, both in how they engaged in occupations and in which occupations they chose to participate. In addition to these findings, the third theme described how participants’ alterations in occupational engagement extended beyond the symptomatic period. In particular, participants explained that they changed their engagement out of concern about reinjury or chose to discontinue certain occupations altogether, even after recovery. For some participants, this change in occupation affected their self-perception.

Participants’ experiences of disruption in occupational engagement highlight the importance of addressing return-to-occupation management in concussion care. An occupation-based approach would facilitate effective pediatric concussion management, focusing on enabling clients to engage in meaningful occupations in their specific contexts (Townsend & Polatajko, 2013). This approach would help children and youth safely reengage in occupation after sustaining a concussion and would provide opportunities for engagement in meaningful occupations in the long term.

Participants in this study described concussion symptoms affecting an array of physical, cognitive, and psychological components, which in turn affected occupational engagement in areas of school and play. Overall, these data indicate the need for individualized therapy that considers activity and environment for effective pediatric concussion management. Children and youth with other diagnoses (e.g., mental health, attention deficit hyperactivity disorder) can have similar difficulties with occupational engagement and have benefited from individualized client-centered service delivery, intervening at the level of the person, the occupation, and the environment (Townsend & Polatajko, 2013). These same approaches are therefore important to implement with people who have sustained a concussion.

Occupational therapists are uniquely situated as members of interdisciplinary teams to address the interaction of the person, their occupations, and their environment, which allows them to provide individualized support (Paniccia & Reed, 2017; Reed, 2011; Townsend & Polatajko, 2013). Moreover, a key role of occupational therapists in addressing the needs of children and youth postconcussion is reengagement in their daily occupations, including self-care, productivity, and leisure (American Occupational Therapy Association, 2017; College of Occupational Therapists of British Columbia, 2011 ; Reed, 2011). Therefore, in meeting the needs of youth who experience concussion, occupational therapists have the potential to play a critical role in effective management and recovery on an interdisciplinary team.

This study’s findings demonstrate the variability in experiences of children and youth after sustaining a concussion and indicate a need for individualized concussion management approaches that consider the occupation and environment. Further research is warranted to explore the efficacy of an individualized approach that considers the occupation and environment to improve pediatric concussion management.

Limitations

This study is limited by a somewhat small and homogeneous sample; all participants sustained a sports-related concussion and were recruited from a previous study of concussion, leading to potential volunteer bias. In addition, the length of time between when the participant experienced their concussion and when they were interviewed varied widely, which may have affected their ability to recall their experience. Finally, although we offered to present our findings for verification and member checking, participants in our sample declined to provide feedback.

Implications for Occupational Therapy Practice

The diverse experiences in all aspects of pediatric concussion demonstrate the need for individualized, client-centered care. Because the concussion recovery process directly affects engagement in occupations, considering the person’s activity goals and environmental context may be important in concussion management. Occupational therapists are key members of an interdisciplinary concussion rehabilitation team. This study has the following implications for occupational therapy practice:

Participants in this study described variable recovery patterns, lack of knowledge about concussion recovery, and a negative effect of concussion on occupational engagement. Occupational therapists can use a client-centered, occupation-based framework to guide intervention for children and youth with concussion.

Children and youth report decreased occupational engagement after concussion; occupational therapists can address this with an occupational-based goal.

Individualized, client-centered, occupation-based approaches may be effective in pediatric concussion management.

Occupational therapists play a valuable role in the provision of intervention and education on concussion management.

Conclusion

This study describes the subjective experiences of children and youth returning to activity after concussion. Participants described diverse concussion experiences, inconsistent provision of concussion management knowledge, and the impact of their injury on their occupational engagement both during and after recovery. These findings highlight the need for individualized, client-centered, occupation-based approaches to pediatric concussion management and encourage the involvement of occupational therapists on multidisciplinary teams to enhance concussion services and recovery outcomes for children and youth.

Footnotes

Acknowledgments

We thank the participants for their time and engagement in our study.

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