Social support during youth concussion recovery

ABSTRACT

Purpose

We explored the lived experience of high-school aged girls receiving social support during concussion recovery to better understand (1) how they define meaningful social support and barriers/facilitators to receiving it; (2) who provides that support; and (3) the role of peers.

Methods

In person, semi-structured interviews were conducted with 10 girls (aged 14–19 years) with a personal history of concussion.

Results

Close friends, youth with personal history of concussion, and parents were identified as key providers of meaningful social support during concussion recovery. Participants identified specific examples of support provided by each group. Close friends built a sense of social inclusion that mitigated feelings of social isolation. Youth with a personal history of concussion used their lived experiences to communicate empathy and validate the participant’s challenges. Parents assisted with practical challenges (e.g. accessing accommodations) by leveraging their “adult power”.

Participants identified that lack of understanding of their lived experiences was a key barrier to receiving support. They proposed solutions focused on education initiatives highlighting personal accounts from youth with concussion, and specific examples of how peers can help.

Conclusions

Fostering social support may require strategies tailored to each group of key providers as they mitigate different challenges in recovery.

KEYWORDS:

• Concussion
• social support
• youth
• pediatric
• peer support

Introduction

A concussion is a mild traumatic brain injury caused by biomechanical forces to the head, neck, or body, resulting in a heterogeneous range of physical, cognitive, sleep-related, and emotional symptoms (1). Concussions are a frequent pediatric injury, with 19.5% of youth reporting a diagnosis of concussion in their lifetime (2,3). The emotional sequelae of concussion (e.g. anxiety, irritability) can be challenging, especially for youth with symptoms lasting longer than 4 weeks (4). For example, higher levels of anxiety are reported in youth with persisting symptoms (5). Since up to 30% of youth experience symptoms that persist beyond 4 weeks (6), managing emotional disruptions post-concussion is an important component of reducing concussion-related morbidity.

Many social aspects of the concussion recovery process can contribute to the emotional challenges of recovery. For example, concussion management requires initial physical and cognitive rest with gradual increases in activity (7). This can restrict participation in school and extracurricular activities (7), which may lead to feelings of social isolation (8), and heighten emotional challenges including frustration and mood swings (9). In addition, compared to a musculoskeletal injury, a concussion is not visible (7), and may not garner the same recognition and thus potential for support. For example, adolescents with sports-related concussions (SRC) report being called “fakers” by their peers (10). These experiences are highly invalidating, socially isolating, and magnify emotional difficulties (11). A lack of understanding of the seriousness of a concussion by educators also contributes to difficulties in accessing the accommodations necessary for a successful return to school (12).

Fostering social support may help improve the social experiences of youth with concussion and in doing so may positively impact their emotional functioning. Social support is defined as an exchange of resources between two individuals with the goal of enhancing the wellbeing of the recipient (13) and can include [1] emotional (i.e. building a sense of social inclusion, reassurance, and care) (14,15); [2] tangible (i.e. direct practical aid such as physical, or monetary support) (15); and [3] informational (i.e. information/advice that helps an individual understand or solve a problem) support (15).

Social support may play a positive role in concussion recovery by decreasing anxiety (16); increasing community integration (17); and providing validation that buffers struggles with concussion as an invisible injury (11). However, limited research exists on what constitutes meaningful social support for youth during recovery and who provides it. In addition, research has demonstrated that perceived social support (i.e. the elements of support that are conceptualized as supportive by the recipient) rather than received social support (i.e. elements conceptualized as supportive by the provider) is most strongly associated with positive health outcomes (18). Thus, it is imperative to explore the types of social support youth find most meaningful from their own perspectives.

Youth have highlighted their peers as an important source of social support during concussion recovery (10,19). Typically for individuals living with an injury or illness (e.g. cancer, TBI), a peer is someone who has lived experience with the injury/illness that they can draw on when providing support (20). However, youth recovering from concussion often define their peers more broadly as any friend, classmate, or teammate regardless of personal concussion history (10,19). Thus, it is also necessary to gain a clearer understanding of who youth view as peers within the context of concussion recovery, and their specific roles in providing social support. The purpose of this study was to enhance our understanding of meaningful social support from youth perspectives and inform the development of recommendations for the provision of social support following a concussion.

Method

In line with our ontological and epistemological assumptions that youth are the “experts” of their concussion experiences, and therefore in the best position to enhance our knowledge of relevant social supports, we purposively sampled youth with a history of concussion (21). Inclusion criteria included [1] 12–21 years of age; [2] self-reported history of concussion while in high-school; and [3] enrolled in, or attended high-school within the past 4 months. Participants were excluded if they [1] were non-English speaking; [2] had begun attending post-secondary school, and/or [3] did not have the capacity to consent. Participants were recruited from the community, and clinical and research programmes at Holland Bloorview Kids Rehabilitation Hospital. Ethics approval was granted by the Research Ethics Board at Holland Bloorview Kids Rehabilitation Hospital. Written informed consent was obtained from each participant.

The study used an exploratory descriptive qualitative design. Ten participants completed in-person semi-structured interviews. Interviews (23–84 min long) were conducted by K.M. and H.K. between July 2018 and March 2019. Interviews opened with demographic questions related to school and extracurricular involvement, and general questions about experiences with concussion to gain an understanding of how concussion impacted the participant’s school, social and extracurricular engagement. More specific questions followed, designed to address knowledge gaps including [1] the role that social support plays in recovery; [2] key providers of support; [3] barriers and facilitators; and [4] youth preferences for support provided by peers. Semi-structured interviews provided youth with the agency to shape the discussion based on their perceptions of the most relevant elements of support.

Interviews were audio recorded, transcribed verbatim and checked for accuracy. Interviews were analyzed using deductive thematic analysis involving six stages: [1] data familiarization, [2] generating codes, [3] searching for themes, [4] reviewing themes, [5] defining and naming themes, and [6] preparing a final draft (22). K.M. and H.K. read each interview multiple times to gain an in-depth familiarity with the data, independently coded the data, discussed, debated and reached consensus on developing codes. Codes were subsequently grouped into themes related to recovery and relevant supports. Emerging themes were also discussed with A.H. to ensure trustworthiness, define the meaning of each theme, and reach consensus on relevant themes. To enhance credibility and trustworthiness we used [1] field notes and debriefs on individual interviews; and [2] memoing to track questions, assumptions and interpretations throughout analysis (23–25). Additionally, in keeping with positioning participants as the “experts”, each participant was provided with a summary of their transcript, including key developing themes and asked to confirm the accuracy of interpretations, or make changes (26). Sampling, interviewing, and analysis occurred concurrently until data saturation was reached (youth discussed no new concepts within interviews) (27).

Results

Participants all identified as girls/women, were between the ages of 14–19 years, in grades 9–12 and in a variety of school settings (i.e. public school, private school, adult learning, special education). They reported various mechanisms of injury including SRC and non-SRC (e.g. motor vehicle accident). Four themes related to concussion recovery and social support were identified: [1] emotional challenges with peers; [2] practical challenges managing school; [3] valuable and meaningful supports; and [4] the role of knowledge in facilitating the provision of meaningful support. Across themes youth identified two different groups of peers throughout their discussions: [1] youth with a personal history of concussion; and [2] a broader “peer group” which included friends, teammates and classmates regardless of concussion history.

Theme 1: emotional challenges with peers (i.e. friends, teammates, classmates)

Feeling misunderstood

All participants discussed feeling misunderstood and invalidated. Participants felt that their peers did not understand the severity of their concussion because it was an invisible injury and questioned the validity of their experiences particularly if their challenges persisted. For example, P04 avoided discussing her concussion with her teammates, as she felt they did not understand her persisting symptoms:

P04: They kind of thought that my concussion wasn’t as bad as I was saying it was […] they were like “oh it’s her concussion, it’s her concussion” [mocking tone] … I don’t think they really understood that it could actually be that bad, because in gymnastics it’s all like “you break your arm and it will heal in like six weeks at most”, this was like a year and a half later.

This lack of understanding often manifested as peers mocking (as above), or creating rumours that youth were “faking it” to get out of school or extracurricular responsibilities.

Feeling socially isolated

Participants discussed how the need for physical/cognitive rest and persistent symptoms (i.e. sensitivity to light/noise, headaches, anxiety) restricted participation in loud, busy, and cognitively demanding social environments (e.g. school, parties), and in turn, in person activities with friends (e.g. eating together at lunch, going to the movies). This restricted engagement led to feelings of social isolation and missing out:

P03: I feel like [interactions with friends] changed, because … I got really sensitive to really bright lights and loud environments … I used to sit in the cafeteria with them at lunch time but then ever since I sort of couldn’t go in the cafeteria anymore, ‘cuz it was just too loud for me, I sat in [the] resource room to eat. But then my friends sort of drifted away from that because they went out for lunch and I didn’t want to go out.

Feeling guilty

Participants reported that their friends frequently expressed frustration with their post-concussion limitations and decreased ability to fulfil their pre-concussion social roles (e.g. help a friend with homework, driving friends to a social outing). This role strain often led to feelings of guilt:

P09: We had all planned to go [to the amusement park] and then I got my concussion, I was their ride and so then they ended up not being able to go […] they always [made] that joke of “Oh [participant name] made it so we couldn’t go.” They [seemed to be] just joking around … but … I felt bad at the time that I was the one that [was] like making them not be able to go.

Feeling unable to ask for help

Feeling misunderstood, socially isolated, and guilty made it challenging for youth to ask for the support they needed from peers. For example, not knowing how to explain the seriousness of one’s invisible injury made it difficult to communicate needs with peers. Lack of belief around the severity of the injury could also be made asking for support feel like a “fight”:

P04: They thought I was making the symptoms seem bigger than they actually are … That kind of just made [me feel] like “No! They are trying to go against me.” […] There was so many people fighting the fact that I had a concussion.

As participants became more socially isolated, less able to fulfill their social roles (and reciprocate socially) they were more likely to feel like burdens, and selfish when asking for support:

P01: [After] I had a concussion I was less close with some of my other friends … because I didn’t really have the energy to talk to them, and hang out, and think about their lives so I kind of drifted apart […] [Drifting apart] added to the anxiety of the concussion … lot of doubts about it like “Am I just being a pain for these people? […] I’m spending so much time on this problem, other people have problems too; I need to focus on that […] started kind of feeling selfish about that.

Theme 2: practical challenges managing school

Concerns about return to school

Participants expressed that the main practical challenge in recovery was transitioning back to school. They described the process of trying to juggle keeping up with schoolwork, catching up on missed assignments, and managing their concussion symptoms while at school as overwhelming:

P08: I still had to keep up with all the same work … that was really difficult because I had all these projects I had to keep up with … and I was behind in that, and I had to make up my tests and so it was very overwhelming for me that I just had so much to do.

Missing school, and subsequently falling behind also exacerbated feelings of social isolation as school was a primary environment for social interaction. For participants in Grade 12, falling behind was particularly challenging as friends graduated and transitioned to work or post-secondary education such that participants found themselves returning to school without a support network:

P07: By the end of the year I could go to school for 2 hours … I was supposed to graduate then, and because of the concussion, being away from my friends, I lost contact with almost all of them. So when I went back to school I didn’t know anyone.

Role of accommodations

Meaningful accommodations (e.g. printing worksheets, extending deadlines, reduced course loads) were highlighted as key for successful return to school. They alleviated cognitive difficulties and work burden such that participants felt that they could manage schoolwork. For example, P01 highlights the importance of deadline extensions when she was trying to finish multiple culminating assignments:

P01: My science teacher was a major help and so was my English teacher. When this concussion thing was going on it was culminating time. Final project do it by now, by this deadline – and I just couldn’t. So I came to my science teacher and he extended the deadline. I would not have been able to do any of the work that I was assigned if the due date wasn’t extended.

Facilitators and barriers to accessing accommodations

Successful experiences accessing accommodations were described as encompassing [1] requests for accommodations being taken at face value and provided without resistance and [2] a collaborative process where various players (e.g. parents, teachers, school administrators, guidance counsellors, learning strategists) worked with youth to address their needs. Clinicians were identified as particularly beneficial in providing youth with information about specific accommodations they were entitled to.

Barriers to accommodations that participants experienced included [1] having limited knowledge about what accommodations they were entitled to; [2] mistrust by schools/teachers/administrators of students’ self-reported limitations – leading participants to feel that they were not credible knowledge sources; [3] requests for formal medical documentation (i.e. requiring visits to the doctor); and [4] perceptions that peers viewed accommodations as an unfair advantage, exacerbating feelings of isolation.

P03 describes how lack of knowledge regarding accommodations made it difficult to self-advocate:

P03: I didn’t know how to help myself and what I needed to ask for like for the whole accommodations issue like I never needed accommodations before, but then after it’s like I needed to ask for it, and I guess you had to work on self-advocacy skills ‘cuz it’s different now.

Even when participants asked for supports, they were often denied, and the subsequent process of advocating for accommodations became a “fight”. P04 discusses her “fight” with school administrators who did not value her self-report and required her to undergo formal memory testing to validate her request:

P04: I remember it was like a big fight like against my school because they didn’t think that I had memory problems … I don’t know they just didn’t like [to] believe I had a memory problem unless I could present it to them like on paper … facts, like “Oh you did memory testing, and this shows that you have memory problems”. They were just hard to work with about the like whole concussion thing.

Theme 3: valuable and meaningful support

Youth discussed how the most meaningful social supports came in the form of specific actions with elements of both tangible and emotional support. Supports were provided by three key groups: [1] close friends; [2] peers with a personal history of concussion; and [3] parents. Youth valued the support provided by each group differently.

Close friends

Youth indicated how support from close friends, who knew them better and were thus better able to understand their limitations and needs, was more beneficial than support from their broader peer group:

P05: Because my friends knew me, and knew the symptoms – even though there was a video shown at assembly, but it doesn’t really sink in to know that, “Oh, when someone’s had a concussion they might be tired and stressed”, so my friend would carry my books, but other people might not come to that conclusion, that I might need that sort of help.

Table 1 highlights specific actions that participants found most beneficial from close friends. These actions helped mitigate emotional challenges during concussion recovery by [1] building a sense of social inclusion and highlighting youth’s access to a support network and [2] communicating an understanding of limitations and building a sense of solidarity when accessing support. Although friends primarily helped with emotional challenges, they also helped participants manage school-related demands and ensured that they did not feel overwhelmed (see Table 1).

Table 1. Specific examples of valuable and meaningful support from close friends.

Specific actions	Examples of specific actions given by participants	Example quotes
Build a sense of social inclusion and highlight youth’s access to a support network	Checking in (texting, phone calls) that express youth are missed or provide updates on social life and school Visiting them at home	P10: I really enjoyed the surprise visit because I didn’t know they were coming over after basketball […] They wanted to see me and I thought that was really nice. … I am a really social person. I love being with my friends it’s always the best feeling to be around people that you trust and care about and when they came to my house I was just so happy […] ‘cuz yeah I didn’t really see that many people when I was at home like just my parents and my dogs.
Communicate understanding about limitations and build a sense of solidarity when accessing support	Genuinely asking youth about their specific needs and following up Validating youths need for rest, social support and school accommodations Asking about their limitations (e.g. difficulties in loud and busy environments) and planning social activities that consider youth’s limitations Helping youth advocate for their needs (e.g. joining them when talking to a teacher about accommodations) Standing up for youth when peers call them “fakers”	P07: She did meet up with me a couple times for dinner just to see how I was doing, and she would be mindful that I didn’t like crowded places. Like before my concussion I loved going to the mall and like really outgoing: And then after the concussion I was more reserved maybe it was like for that few months that I was detached from everyone that like I didn’t feel comfortable leaving the house anymore, so she would be pretty mindful about places we’d go to eat, and it meant a lot to me I guess.
Help with managing school	Sharing notes Carrying books between classes Taking on more work in a group project	P01: We were doing a really big project for school at the time and I was in a group of five people including myself. They all understood that with this concussion things might be a little slower and I might get less work done than usual and they were completely accommodating with that. They helped me out, they corrected some of my work more than they normally would. They were great and that really helped.

Youth with a personal history of concussion

Youth with a personal history of concussion provided support through similar actions as close friends (without a history of concussion). They were however perceived by participants as the most important providers of support because they were better able to [1] understand and empathize with youth’s personal experiences; [2] share personal stories that made youth feel validated; and [3] anticipate and address post-concussion needs (see Table 2).

Table 2. Supportive actions best provided by peers with previous history of concussion.

Specific actions	Example quotes
Communicate understanding and empathize better with youth	P09: I have some friends at school that um had a concussion in high-school and they had to miss some, I think one of them had to miss an exam and she was like “oh yeah I know what you’re going through and it’s not easy and stuff like that” and so she was really helpful.
Share validating stories	P08: It was nice to be able to like talk to the other kids cause they went through the same thing too, and an interesting thing was schools not understanding how to support it and you know there’s so much work to do and it’s really difficult.
Anticipate and meet post-concussion needs	P01: Um with someone who didn’t have the experience it was more, it was awkward, and it was a lot more forced and ‘cuz they didn’t fully understand the situation […] things were a lot more robotic almost. It was like they had read up on something online like “this is what I am supposed to do” and then they did it, with my friend she um, she knew what it had felt like and she was able to kind of create the environment that she personally wanted when she had her concussion.

Parents

While support from friends mitigated emotional/social challenges, supportive actions from parents helped to address practical challenges that friends were not as well positioned to address:

P01: I got a much more kind of mature support from my parents. They were able to talk to the school more than my friends were able to, because my friends were not my guardians, so that kind of adult power, that my friends didn’t have that was a different kind of support for sure.

“Adult power” (P01) was leveraged in multiple ways by parents to meaningfully provide support. This included leveraging their [1] health literacy to access healthcare and concussion resources (e.g. researching resources, scheduling healthcare appointments); [2] ability to drive to get youth to appointments and lessen the burden of school; and [3] credibility in school-based settings to advocate for accommodations (e.g., managing communication with school administrators, advocating for accommodations if not initially provided) (see Table 3). Parents also provided emotional support that lessened concerns about managing school. Participants found it meaningful when parents expressed an understanding of their academic difficulties, allowed them to stay home from school when they were struggling, and reassured them it was okay to prioritize their health (see Table 3)

Table 3. Specific examples of valuable and meaningful support from parents.

Specific actions	Examples of specific actions given by participants	Example quotes
Provide access to healthcare and concussion resources	Finding concussion resources Scheduling health care appointments Transporting to appointments	P04: My mom was the most involved in the whole situation […] she would tell me what to say if I should schedule a meeting or whatever […]my mom was the most involved with her research, and coming to [hospital name].
Leverage credibility in school-based settings to advocate for accommodations	Managing communication with school administrators and teachers Advocating for accommodations if not initially provided	P08: [My mom] would call [saying] “listen this is ridiculous she’s doing her best she’s trying really hard I don’t get why [she] is not getting extra time”.
Mitigate concerns about academic challenges	Express an understanding of academic difficulties Allow youth to stay home from school when they are struggling Encourage a step-wise return to school and reassure youth it is okay to prioritize their health	P09: I wanted to go back to school full time […] I didn’t want to fall behind or draw extra attention to myself … and then my parents being supportive of me missing school for my health reasons was really good because I know a lot of other people’s parents are like “No school is what’s important I want you to be getting these marks on these tests”.

Theme 4: the role of knowledge in facilitating the provision of meaningful support

Need for concussion knowledge within support networks

The level of understanding of concussion within participants’ support networks often dictated whether they experienced challenges or received meaningful support. This is highlighted by P02 who compared her experience returning to school after two different concussions. She highlights how accessing accommodations was facilitated by an increased focus on concussion in the media.

P02: My first concussion was in grade seven. It lasted for about five months … it was more challenging for me and I don’t think concussions were as popular back then so not as many people knew how to deal with it. But then my second concussion I had in grade eleven and it was a lot better, I received a lot better care from my teachers, there’s a lot more about concussions I find in the media, and people just know what they are more so it was a lot easier to recover.

Despite its important role in facilitating support, and the general increase in concussion awareness within the media, most participants reported that only a select group of people had sufficient knowledge to properly understand their experience. This group typically included people with previous concussion knowledge such as youth with a personal history of concussion, friends involved in sports organizations that have concussion education sessions and protocols, or parents who attended concussion education sessions. P02 attributed the global increase in concussion knowledge within her community to the fact that her community was very sports focussed – most members of her community (parents, teachers, peers) had either experienced an SRC or learned about concussion through a sports organization run education session.

Compared to P02, most participants discussed a small number of knowledgeable supports, and perceived that most people within their broader social networks had insufficient knowledge. This included limited knowledge about [1] physical symptoms (e.g. they only knew concussions were associated with headaches but not sensitivity to light/noise); [2] other symptom domains (e.g. cognitive, emotional); or [3] the impact of symptoms on daily functioning of youth and their emotional wellbeing. For example, as P02 indicates an understanding of emotional symptoms remains limited:

I

: Are there any other pieces of information you think are important for people to know?

P02: I think maybe like, like mood swings, I was pretty grumpy, I remember when I had my concussion I was really angry and frustrated, and more sensitive. They don’t really know the emotional side of it, they just know more the headaches and stuff, but they don’t know everything.

Participant-driven solutions

Participants expressed that educating their broader peer groups about the functional and emotional impacts of concussion may facilitate the provision of meaningful support. They proposed solutions that primarily focused on school-based education initiatives (e.g. presentations, videos) that discuss all symptom domains, provide “real-world” examples or personal accounts from youth with concussion, and that provide practical suggestions about how peers can support friends, classmates and teammates with concussion. For example, P05 compares a video shown at a school assembly, to an approach she feels would more effectively build support capacity within her peers:

P05: [The video] showed the symptoms, how you can tell someone has a concussion but it doesn’t always say how you can help, there were things on the video where it showed how teachers can help, like lessening the load, but then when it comes to the actual classmates there weren’t actually realistic things you could help with and so they really just didn’t know how to help.

I

: Do you have any ideas for how you would help them find out how to help?

P05: Definitely a video, one of those cartoon ones … [with] exemplars to show how a person who had a concussion might struggle with school, and y’know everything that’s going on and give real world examples and show how a friend or peer could help.

Discussion

This research explored the lived experiences of high-school aged youth with a history of concussion and helps us understand what youth define as meaningful social support, and how that support can be provided, by whom, and the specific role peers can play in this process. Participants identified key emotional, and practical challenges with recovery (e.g. feeling socially isolated, difficulties managing school). Consistent with previous literature, these challenges are often related to the invisible nature of concussion as an injury, and the limited understanding about the lived experience of recovery from concussion (7,10–12). Understanding these emotional and practical challenges is key to understanding what youth value as meaningful forms of social support.

Youth definitions of meaningful social support

Social support is commonly divided within the literature into three key categories (i.e. emotional, tangible, informational) (14,15). These are often identified in qualitative research on SRC. For example, both emotional and informational support have been reported as valuable for female university athletes managing concussion (9).

In our study, participants valued emotional and tangible support as the most meaningful types of support, while discussion regarding informational support was limited across interviews. In addition, in contrast to existing categories of social support, our participants discussed support as a function of actions that blended elements of both emotional and tangible support. For example, a friend texting about missed school updated participants about homework (tangible support) and made them feel included (emotional support). These findings suggest that interventions to foster social support should include a focus on specific youth identified key actions (listed in Tables 1–3).

Different roles of key providers of support

We identified three groups of key players with distinct roles in providing social support. Close friends were best positioned to provide support addressing emotional challenges. This is understandable as emotional difficulties primarily occurred in peer-based social settings. Parents were able to leverage their “adult power” to address practical challenges. Youth with a personal history of concussion could better empathize and validate youth because they could draw on lived experiences, share stories, and anticipate post-concussion needs. Similarly, people living with TBI report that peer mentors fulfil a special role in providing social support compared to clinicians, family members and friends because they [1] share validating personal stories that help make sense of recovery; [2] communicate an understanding informed by lived experience; and [3] act as “experts” who can troubleshoot with individuals living with TBI (28).

Developing social support capacity across these different groups can help meet varied post-concussion needs. For example, encouraging peer mentoring for youth with concussion (e.g. through peer mentoring programmes and facilitated support groups) may enhance feelings of validation and empathy. Support from peers with no previous concussion may better address the root causes of the emotional challenges (e.g. social exclusion), as these issues typically arise due to the attitudes and lack of understanding from their broader peer groups.

The role of concussion education

P02 felt that her support network had sufficient knowledge to support her through her concussion recovery due to her community’s focus on sports and access to education about SRC. In contrast, the majority of participants struggled with recovery because of limited knowledge about concussions within their support networks. This dichotomy raises interesting questions: [1] does the focus within the media surrounding SRC serve to increase understanding about concussion outside the sporting community; [2] how do we build education initiatives to foster support capacity outside of sports-related contexts? Participants highlighted a particularly important group to educate about concussion is their broader peer group (i.e. including classmates, teammates, close friends, youth with and without personal history of concussion).

Fostering social support is however not as simple as calling for “more education”. There is an abundance of media coverage, information and education programmes for concussion, and therefore what is needed is not more education about concussion but the right education to foster change in support provision behaviours (29). Participants described how the right education should be led by youth with history of concussion, focus on the emotional and functional impact of concussion, and provide practical examples of support. This echoes the recommendation of Cassilo and Sanderson (30) that concussion education programmes go beyond promoting awareness and reporting, to providing an understanding of the range of emotions athletes experience in SRC.

Building capacity to ask for support

Addressing barriers youth experience self-advocating for personal and academic supports may also be beneficial. For example, challenges in asking for support centred around difficulties explaining concussion as an invisible injury to their broader peer group. Modelled on successful strategies for educating and enhancing patients’ understanding of neuropathic pain (an invisible illness) (31), one strategy to be explored may be providing youth with key metaphors that help communicate their invisible injury. For example, a metaphor comparing energy level post-concussion to a cell phone battery.

A barrier to asking for accommodations in the school setting was a lack of knowledge on what specific accommodations to request. Participants identified clinicians as key supports who provided information on what accommodations they were entitled to. Teachers with limited knowledge about concussion and possible accommodations also cite clinicians as key informational resources (32). Stronger linkages between clinicians and schools in communicating about academic accommodations post-concussion may help mitigate the difficulties youth express self-advocating for support in this domain. However, our participants identified that discussions surrounding accommodations should not only occur between clinicians and teachers but also include youth as equal partners in decision-making. This may require changing teachers attitudes about the credibility of youth self-report and encouraging teachers to engage youth in solutions-focused coaching (i.e. letting youth guide the accommodation process by suggesting their own ideas for return to school) (33). By privileging youth voices, accommodations may be more personalized and the process may feel less like a “fight”.

Limitations and future directions

Recruitment was primarily completed through concussion-focussed clinical and research programmes in a large city centre. Our sample may represent a privileged group regarding access to formalized support and clinicians. For youth in rural settings, informational support (particularly about accommodations) may need to be provided through other community resources, due to lack of access to concussion-focussed programmes or clinicians with experience in youth concussion. Further research is required to better understand: why youth who have access to clinicians value them over other key players as informational supports (e.g. is it due to perceived credibility of clinicians?); and who are key sources of informational support for youth in rural settings and why?

All participants identified as girls/women, therefore our findings may not be generalizable to boys/men. Several significant sex and gender differences exist in recovery. Females experience more cognitive and emotional symptoms than males (34,35), and are more likely to experience prolonged recovery, and identifying as a girl is associated with reduced health-related quality of life after a pediatric concussion (36). Adolescent girls have also been found to report more social support than boys, perceive higher levels of social support from classmates and close friends, and place higher importance on this support (37). Additionally, boys are more likely to seek out informational and tangible rather than emotional support (36). Differences in the recovery and social support experiences highlight the need to explore the perspectives of high-school aged boys on what constitutes meaningful support and the influence of gender on youth’s lived experiences with social support during recovery. The impact of gender on social support experiences may be particularly relevant to explore within the context of SRC where a “culture of sport” centred around the masculine ideals of winning, self-reliance and playing through pain/injury is associated with problems in concussion underreporting and premature return to play (38–40).

Conclusions

In this study, we explored the lived experiences of high-school aged youth receiving social support during concussion recovery. We identified concrete examples of meaningful support that address key emotional and practical challenges. Support provided by close friends, youth with personal concussion history, and parents mitigated different challenges in recovery – indicating unique strategies may be needed to build social support capacity across groups. Other strategies to build youth’s access to support during recovery may include [1] building concussion education programmes focused on teaching youths’ broader peer group about the emotional and day-to-day impacts of concussion and [2] providing youth with tools to self-advocate for personal and academic supports.

Declaration of interest statement

The authors report no conflict of interest.

Acknowledgments

We would like to acknowledge the youth participants, the Youth Concussion Awareness Network (You-CAN) team, the Ward Family and the Concussion Centre team (Bloorview Research Institute) specifically Rosephine Del Fernandes and Katie Mah.

Additional information

Funding

This work was supported by the Canadian Institutes of Health Research under grant #153025 and the Ward Family.