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Abstract

Sport-related concussions (SRCs) occur at alarming rates among adolescents and evidence suggests that adolescents experience more severe and longer-lasting symptoms compared to other age groups. Developmentally, adolescence is a time when youth become less reliant on their parents, establish their personal identity, and rely more on other social support networks (e.g., peers, teammates). However, previous studies show that parents play a prominent role in the recovery process from an SRC, especially in situations where recovery is prolonged. The purpose of this study was to examine the lived experiences of parents/guardians of teens who were recovering from a concussion and whose symptoms were persistent. Participants (N = 12) were individually interviewed to better understand how they navigated and advocated for their teen during their prolonged recovery. An inductive content analysis revealed eight thematic categories that were interpreted with a developmental lens: (a) difficulties enforcing cognitive and physical rest, (b) concerns about depression and isolation, (c) observing struggles with athletic identity, (d) feelings of frustration, helplessness, and stress, (e) challenges of a hidden injury, (f) decisions about returning to sport, (g) being lied to about symptoms, and (h) offering strategies and practical advice. The themes illustrate how challenging and complicated the recovery process can be for parents of teenagers in particular, which is supported in previous concussion studies and the broader developmental literature. These results reinforce the idea that taking a biopsychosocial approach to care is best in order to adequately support parents/guardians and adolescents during the SRC recovery process.

Keywords

Youth athletes social isolation return to sport parental role biopsychosocial

While sport-related concussions (SRC) occur among athletes of all ages, those experienced by children and adolescents may be most concerning given that up to 2.3 million SRCs occur in these age groups per year.¹ Adolescence is a crucial period for development that makes the experience of and recovery from an SRC unique.² Compared to collegiate athletes and younger athletes, studies reveal that adolescent athletes report more severe symptoms and take longer to recover from SRCs.^2–4 Adolescents are also more likely than younger children or adults to develop post-concussion syndrome (in current parlance, persistent post-concussive symptoms), which can be diagnosed by seeing symptoms that persist for at least a month following a mild traumatic brain injury.⁵ Parents play an important yet challenging role in the recovery process, as their teenagers are increasingly seeking independence, but are still minors who require parental involvement.⁶ The purpose of this research was to explore the lived experiences of parents and guardians whose adolescents experienced prolonged symptoms following an SRC.

The recovery process for an SRC for adolescents is complicated and depends on the severity of symptoms. While the majority of children and adolescents recover from an SRC within 1–4 weeks,⁷ as much as 30% still have symptoms after four weeks.⁸ Young athletes with persistent post-concussive symptoms experience physical issues including fatigue, headaches, and disruptions in sleep.⁸ Goldstein⁸ notes that additional psychological issues may emerge, such as feeling isolated, disconnected, fearful, and stressed. Several studies with adolescents confirm the significant emotional strain and feelings of frustration that accompany SRCs.^9–11 These emotional problems do not necessarily occur from the concussion itself but rather from the associated life changes and stressors (e.g., absences from school, unable to participate in sports). More serious mental health concerns may emerge post-concussion, including anxiety, depression, or even suicide, although comparatively less information is available about mental health outcomes for youth athletes.¹²

Bloom et al.¹³ acknowledge that concussions are qualitatively different than other injuries, which adds complexity to the recovery process. For example, because concussed athletes do not display typical signs of an injury (e.g., cast, bandages), other people may doubt the existence of any injury. Concussions are also a notably heterogenous injury, making it difficult to diagnose and prescribe treatment.² Moreover, when the psychological symptoms of concussions go untreated, they can persist for months or longer and ultimately affect an athlete's quality of life. Wiese-Bjornstal's¹⁴ biopsychosocial view of the post-injury response exemplifies this dynamic and pervasive recovery process from an SRC. Her model emphasizes the cognitions, affect, behaviors, and outcomes that injured athletes experience and engage in, and she advocates for scholars to integrate knowledge from biological, behavioral, and social sciences to understand the all-encompassing nature of recovery.

Developmental sport psychology scholars have identified specific cognitive, social, and psychological changes that can provide insight into adolescents’ experiences recovering from an SRC.^6,15,16 While children engage in more concrete thinking, adolescents develop the ability to think abstractly and learn to use more reflective and self-regulatory processes.¹⁵ Relative to the importance of parents during early and middle childhood, adolescence is characterized by the increasing importance of peers as sources of competence information, confirmation of one's social status, and opportunities for close friendships.¹⁶ Perceived autonomy is another salient psychological need for teenagers as they strive for personal independence in their decision-making. Horn and Newton⁶ note that negotiations between parents and their children in decision-making processes are key to developing this personal autonomy. One other key developmental task during adolescence is the exploration and development of one's personal identity. Increasing from late childhood into adolescence, sport participants develop a specific athletic identity, which captures how much an individual identifies with the role of athlete.¹⁷

These developmental considerations are quite relevant for adolescents’ SRC recovery processes. For example, a common part of concussion recovery is prescribed physical and cognitive rest, which prevents these young athletes from playing their sport, participating in school, and engaging in social activities (e.g., social media, video games). Although a gradual reintroduction of both cognitive and physical activities occurs during recovery, such restrictions are particularly difficult for adolescent athletes given the importance of their athletic identity development and reliance on peers for social interactions. Moreover, the management of their treatment and recovery involves their parents/guardians, from whom they are increasingly seeking independence and exploring to what extent they can make decisions on their own. Existing literature supports these hypotheses. Two recent reviews examined the needs of children and their families following a child's traumatic injury, with most studies focusing on traumatic brain injury.^18,19 Both papers identified themes around adolescent-specific needs: teenagers wanted to be in control, involved in the decision-making process, and have confidential care independent from their parents.

Focusing on social support during recovery, Kita and colleagues²⁰ interviewed 14–19 year-old girls/women who had a self-reported history of concussion. Peers emerged as both a positive and negative influence on recovery; participants reported feeling misunderstood by and isolated from their broader peer group but also felt validated and supported by close friends. Parents also emerged as a source of emotional and tangible support, in part by using their ‘adult power’²⁰ (pp 785) to coordinate with healthcare and school professionals involved in their recovery. Valovich McLeod, Wagner, and Bacon¹¹ found that adolescents reported trying to minimize or hide their SRC symptoms in an effort to maintain a normal life. These adolescents wanted to avoid being teased or called a ‘faker’ and simply continue their participation in their sport, school, and social activities.

Some studies have included parents’ experiences of their children's recovery from SRCs and other non-sport related traumatic brain injuries. Jones et al.²¹ found that parents were emotionally impacted by the injury, which included being worried about their child's future and feeling as though they were on an emotional roller coaster. Parents also acknowledged they had to reinforce activity restrictions and were unsure of what was safe for their children. Parents in the Campbell et al.²² study expressed similar concerns about the long-term impact for their children, and some felt confused or dissatisfied with the concussion management guidelines. Daprano, Davies, and Bernstein²³ also found that parents were unsure of proper treatment and return-to-play protocols, confirming a gap in parents’ knowledge of concussion management identified in previous studies. Gagnon et al.'s²⁴ interviews with parents revealed they wanted specific support on how to enforce instructions with adolescents, as they perceived it to be more difficult than if they had younger children.

Therefore, the purpose of the present study was to understand the lived experiences of parents whose teenager had experienced prolonged symptoms stemming from an SRC. Fewer studies have focused on the parental perspective of the recovery process, compared to those focused on parent education about concussions and parents’ awareness of concussion symptoms.²⁵ Moreover, focusing on parents of adolescents who have experienced an SRC presents an opportunity to adopt a developmental lens and highlight age-related aspects salient to their experiences.

Method

This qualitative study utilized a phenomenological approach to learn from the lived experiences of parents by asking them to recount and reflect upon different aspects of supporting their adolescents through SRC recovery. The breadth of experience and inquiry represented within the authorship led to the development of this study for the purpose of (a) sharing knowledge with the broader community affected by adolescent SRCs: health care providers, coaches and athletic trainers, school personnel (e.g., principals, teachers, counselors, school nurses), parents and athletes, and (b) to contribute to the body of literature about adolescent SRCs. The interview guide was developed by the academicians involved with the study, who represent the disciplinary perspectives of sport psychology, motor learning and development, and sport sociology, and approved by the co-authors who are health care professionals. The interview guide was designed to learn from parents’ experiences and reflections about navigating through various domains (e.g., healthcare, school, sport, family) and advocating for their adolescent in these same areas during the recovery period. The data analysis process adhered to phenomenological research practices through ‘deep engagement with the data’²⁶ (pp95) and an interpretive process that involved numerous iterations of reading, writing, categorizing, and describing the participants’ experiences with the phenomenon – adolescent SRCs.^26,27 The authors involved in data analysis are parents, although their children are younger than the adolescents described in this study and not involved in organized sport.

Participants

Eleven parents and one guardian of 12 adolescents (14–17 years old) participated in this study (see Table 1). All participants are herein referred to as ‘parents’, including the one guardian, unless there is a specific quote or example from the guardian. While we did not ask parents to report specific details associated with their teen's medical history, parents shared what they deemed relevant about their teen's concussion history while describing their experiences. Some of the teenagers whose parent participated in the study had experienced multiple concussions, some before and/or after the SRC that resulted in concussion clinic involvement and recruitment to this study. The number of concussions reported by parents ranged from one (n = 3), two (n = 4), three (n = 2), four (n = 1), five (n = 1) to nine (n = 1). Participants resided in the Pacific Northwest Region where youth sport concussion legislation was in place.

Table 1.
Parent-reported concussion history.

Participant Role Teen (Gender) Number of concussions mentioned Age(s) or grade(s) mentioned Sport(s) mentioned

Mother Male 2 8^th grade Football

Mother Female 2 9^th, 10^th grade Softball, Volleyball

Mother Female 4 9^th grade Cheer

Father Female 1 11^th grade Basketball

Mother Female 3 Ages 11, 13, 17 Futsal, Volleyball

Father Male 2 11^th, 12^th grade Basketball

Mother Male 5 4^th, 7^th, 10^th grade Basketball, Football

Mother Male 2 10^th, 11^th grade Football

Grandfather Male 1 9^th grade Football

Mother Female 1 Did not report Cheer

Mother Female 9 5^th, 6^th, 11^th grade Soccer, Volleyball

Mother Female 3 11^th grade Track, Volleyball

Interview guide

The semi-structured interviews followed a guide to ensure consistency between topics covered with each participant (see Table 2).²⁸ Each interview began by asking for an overview of their experience with their teen's injury and recovery process. Following this introduction, parents were then asked specific questions about how they navigated interactions with family members, doctors, other medical personnel, their child's sport team and coach, the school, and other members of the community. Parents were invited to describe the strategies they employed in advocacy and navigation efforts and to share advice with other families going through similar experiences. One pilot interview was conducted to assess the efficacy of the questions for the study purpose and the flow of the interview guide, which subsequently led to minor revisions.

Table 2.
Interview guide

Category of Question Questions

Injury History To get us started, can you give me an overview of your daughter's/son's injury and your experiences during recovery?

Navigating Systems Can you talk about your immediate family's experience with this injury and the recovery process?

What about your experience with the doctors and other medical care providers?

What was your experience with your daughter's/son's sport team and coach?

Please talk about your experience with your daughter's/son's school, such as teachers, the principal, or other staff.

Can you talk about your experiences with other members of your community as you helped your child recover from this injury, e.g., extended family, neighbors, co-workers, other families associated with your daughter's/son's team?

Is there anyone else that you interacted with in this recovery process that we haven’t talked about, e.g., service providers, groups or organizations, individuals?

Advocacy Strategies As you reflect back over your daughter's/son's recovery period, what strategies were successful in helping to support her/him?

What approaches did you try that were not successful?

Can you tell us what was the most challenging aspect of your daughter's/son's injury and recovery?

With the benefit of hindsight, is there anything that you would do differently now?

Advice for Others What advice do you have for parents?

What advice do you have for immediate family members, including the concussed teenager?

What advice do you have for doctors and/or other health care providers?

What advice do you have for youth sport coaches?

What advice do you have for teachers and school officials?

What advice do you have for other members of the community, such as neighbors or co-workers of families?

Given the increased amount of media coverage about concussions, what advice do you have for people in the media who report on concussions?

Is there any other advice you would like to share?

Procedures

After having received approval from an Institutional Review Board, prospective participants who met the inclusion criteria were identified by the manager of a concussion clinic in the Pacific Northwest region and then contacted by one of the study's authors. Of the 14 prospective participants contacted by the clinic manager, twelve were interviewed. Two prospective participants removed themselves from the pool; one declined due to travel distance, while the other did not respond to scheduling attempts. Participants were parents or guardians of adolescents who were between 14–17 years of age when they suffered from an SRC and whose symptoms persisted more than six weeks from the date of injury or had been diagnosed with persistent post-concussive symptoms. The parent with the most involvement in the recovery process (e.g., interacted the most with medical, school, and sport team personnel) was recruited. After receiving written and oral informed consent, participants were interviewed about their lived experiences of supporting their teen through the concussion recovery process. One author conducted all the interviews, in addition to completing all pre- and post-communications (e.g., scheduling, sending transcripts), to build rapport and foster a shared experience in the study. This author has extensive experience with qualitative research and interviewing as a phenomenological method, as well as advocacy for academic accommodations. The participants were unknown to the interviewer prior to the study. All interviews took place in-person in an office building near the concussion clinic, were audio-recorded, and lasted on average 52 min (36–78 min).

Data analysis

Interviews were transcribed verbatim with the exception that identifying details (e.g., name, location) were removed from the transcripts to preserve confidentiality. Participants were given an opportunity to read and provide feedback to ensure correctness of the transcriptions (raw data), veracity of their responses, and to establish their trustworthiness. No corrections or revisions were requested. A thematic approach was used to analyze the data.^27,29 Two authors first read through all 12 transcripts to familiarize themselves with the data set. Next, these two authors independently read the first five interview transcripts to identify relevant themes and categories through an inductive and deductive analysis.²⁹ After the independent analysis, these two authors met, discussed, and agreed upon thematic categories that would be used in subsequent analysis. The two authors used these thematic categories to continue analyzing the seven remaining interview transcripts independently. Once done, the authors met, discussed, and agreed upon the relevant data and thematic categories, similar to the process described above. Finally, the two authors came together again to confirm theme consistency across all interviews. A third author, acting as a critical friend, read through the thematic categories to confirm or provide feedback for potential reorganization, collapsing, or deletions.²⁷ The final thematic categories were thus achieved through a form of triangulation among the three authors involved in the data analysis.³⁰

Findings

Eight themes emerged from the parent interviews, each of which describe aspects of their experiences and illustrate the unique challenges of this injury and developmental age group. Select quotes were included to underscore and illuminate parent experiences. Quotes were edited to remove some of the disfluencies (i.e., the transcription of audible utterances such as ‘um’ and ‘er’) that may distract from the meaning of what the parent reported.³¹ Parent gender is not included (e.g., father, mother, gendered pronouns), unless it appears within a quote, because we did not analyze gender in this study.

Theme 1: difficulties enforcing cognitive and physical rest

Parents found it very difficult to manage and enforce the cognitive and physical rest needed during recovery. One parent explained, ‘It was excruciating to get him to do nothing … that to me is by far the hardest part of it.’ Parents shared that their teens and themselves expressed frustration with the limitations imposed on cognitive rest, including screen time (e.g., laptop, phone). One parent described their daughter's frustrations, “[W]hat do I do? I can’t read my books. I can’t watch TV, watch a movie. I can’t do anything.” Limiting physical activity created challenges, too. Parents saw the disappointment their teens were experiencing, such as looking at their bike ‘with sorrow’ and being told that they could not practice or play with their teammates. One parent observed that their effort to promote rest was complicated by outside forces, which made enforcing cognitive rest more difficult:
I think in those earlier [concussions], even though they had return-to-learn protocols and return-to-play protocols, I don’t think … people understood the cognitive rest aspect of it. Because I felt like that was more of a trigger [ … ] he already was restricted physically, but then, you know, as he’d go back to work and back to school and get more and more put on him eventually with advanced classes, I will say that I think that from that aspect, there wasn’t a great understanding or sympathy of the cognitive rest that was needed for him to recover.
The parental role in enforcing rest led to conflict in some families as this parent explained, ‘There were a lot of fights and arguments to keep her off the television, and to keep her off the homework … and to keep her off cell phones.' Another parent noted how their two teens responded to these restrictions, ‘They’re already kind of angry because their brain's recovering or they’re going through all these emotional swings and you’re like, ya know, devil parents and that. But, in hindsight, they thanked us after.’

Several parents recognized that these restrictions on their teen's day-to-day life caused more isolation so they tried to find balance between rest and social experiences. As one parent said, ‘most teenagers are social … you can’t totally cut them off.’ Success for some came in the form of bribery (e.g., ‘if you don’t watch TV or the cellphone, I will give you x, y, and z’) or reaching a compromise to allow short periods of screen time or social visits. Concerns about isolation due to recovery restrictions led parents to worry about the implications for their teens’ mental health.

Theme 2: concerns about depression and isolation

Nearly all of the parents discussed serious concerns about their teen's mental health during the recovery process and most prominently discussed symptoms of depression. One parent explained,
Dealing with the trauma part of it for them. I don’t think that's addressed very much … that's really hard for a young person to understand and to not be really scared about … I saw him being depressed … It's really scary. And so I take it seriously. It's way too important to just be casual about.
Parents also commented on how their teens were socially isolated from their peers as a result of the restrictions needed for their recovery, additionally contributing to their mental health. One parent elaborated
‘Cause she's a social kid … it was hard. I know she did feel kind of disconnected because she wasn’t able to cheer. And initially, she went to like the next two football games and we were like “this is ridiculous.” We let her go for half a game and we get her home and she's in tears because her head hurts so bad.
Another parent shared,
She got in a real bad depression … she wanted to quit school. She wanted to go home, have me homeschool her. She said, “I feel like I’m a ghost. That I’m just existing. I walk around, I’m just a shell.” She said, “nobody doesn’t even acknowledge me.” She says, “it's like I’m not even here.”
For two parents, their child's experience of depression was more severe and led to concerns about suicide, as illustrated by these parent quotes:
[Guardian] I think for a while he was very depressed. “That is the way I have to live forever?” … I don’t think it got to the point where he was thinking suicidal thoughts with any degree of severity. But … I’m not gonna tell you that probably didn’t enter his mind. His cousin had committed suicide that summer.

[Parent] She did suffer a lot of depression … where she was put on antidepressants … it was very dark for her. Where at one point she thought that she would end her life because she was so depressed with the way that her lifestyle was going.

Isolation from their sport carried more weight in those cases when parents shared the extent to which their teens had strong athletic identities.

Theme 3: observing struggles with athletic identity

Numerous parents described how their teens had well-developed athletic identities and that the experience of a concussion was particularly challenging because they could not partake in the sport central to who they were (whether that was temporary or long-term). One parent commented, ‘It was very, very difficult when she had to end soccer because she had been playing soccer since she was three years old. So, that's the sport that she loved. The sport that she identified herself in.’ Another parent elaborated on how they had unsuccessfully tried to convince their teen to not only define themselves in terms of being an athlete. They said:
He wasn’t able to play football his junior year … and these were exact words. “Mom, I’m a football player. That's who I am, that's what I do.” And no matter how much as a parent you say that's an activity you do. It … isn’t who you are. The essence of you. You know, kids don’t hear that. They … listen. But they don’t really internalize and hear those words.
Many parents’ responses related to this theme focused on the emotional impact this loss of identity was having on their child. One parent said,
I think dealing with the emotional part of him losing something that was so important to him. Something he’d worked so hard for … it was who he was to him. That was really hard. And, you know, teenage boys aren’t supposed to, you know, [laughed] they aren’t supposed to be emotional about things and it was very emotional. It was very much a period of mourning something that was important to him.

The emotions associated with the loss of, or challenges to, teens’ athletic identity resonate with the next theme, as well, which includes a description of teens’ frustration associated with their injury and separation from sport.

Theme 4: feelings of frustration, helplessness, and stress

Feelings of frustration was a commonly cited emotion parents experienced and one they shared with their child. One parent described their son as ‘really frustrated … that he was prevented from doing things that he loved to do … I think the words “not fair” were said several times.’ Another parent shared that their son's ‘biggest regret of high school is that [basketball] was kind of taken from him.’ Several other parents disclosed how difficult it was to watch their child suffering and reported feelings of helplessness. One parent explained,
You wanna take that pain away from them and it's hard, especially at that age … when they’re locked in their room and they can’t do their homework and they can’t participate in sports and they can’t engage with people. To see them hurting that much and to not be able to do something.
The length and pace of concussion recovery caused frustration to parents and teens, as illustrated by this parent:
He was frustrated. … at first, thinking, “Okay, I’m, you know, I’m gonna be better just like everybody thought.” And he wasn’t getting better. And it was frustrating. And as it went on, and it, for a month to month to months and every time he’d try the balance test, he’d flunk it. And I mean, really flunk it. It was weighing on his mind.

An effort to balance ‘trying to let him be a kid and making hard decisions for them because you want them to be protected’ caused worry for another parent, which echoes the challenges of return-to-sport decisions described earlier. Concerns about the future weighed heavily on some parents, such as one who lamented, ‘It was quite stressful to take a such a high performing [student] and to have such a wonderful future ahead of her and because of a sport, a stupid, silly sport, that that may not happen.’

Theme 5: challenges of a hidden injury

All twelve participants talked about the challenges associated with the recognition that concussions are a hidden injury. This feature of concussions created situations for parents and teens to navigate during interactions with family, peers, and community members (such as fellow sport parents). Parents frequently fielded requests for updates about their teen's status and received comments, such as ‘Well, she looks fine … She has to be faking or something.’ Immediate family members tended to be supportive and sympathetic, but parents reported that some family were less so. One parent noted that family members did not believe in concussions:
I’m divorced and so her dad … the first time she had a concussion didn’t, doesn’t believe in them. And so he and his parents were trying to convince her that it was all in her head. That it wasn’t really real. And that football players for years. … You know the old mentality of this doesn’t really happen and you’re okay. [… ] The third time, of course, he still doesn’t believe in concussions. Either do the grandparents.
Another parent shared their spouse's and extended family's observation that the teen looked ‘normal’; ‘she hit her head, you know. She’ll be fine tomorrow.’

Teens also had friends and siblings who did not know how to handle an injury that they could not see and did not understand, as described by this parent:
Her friends didn’t know how to work with or react around that. And that was interesting because some of her friends retracted. And both guys and gals and so she kind of felt solo, so you’re trying to build that support structure, but at the same time, it's not a broken, physical injury that they can see. They don’t know how to deal with it. [… ] And then when you have your friends retracting, because they’re, “Nah, she should be okay, why isn’t she okay? I don’t see a broken arm.” So, they don’t know how to react. They’re not educated on it and so you kinda get, we had that double whammy, it felt like.
According to one parent, their teen felt like she was being judged because people could not see her physical injury, which differed from her experience with surgery:
Everybody is like, “Oh I can see your scar, I can see you had brain surgery,” you know. And, there's all this influx of let me bring you dinner, let's bring you gifts, everything. [ … ] But with concussion, there's none of that. [laughs] It almost feels kind of like judgement–I feel like. Like, “Oh, you’re not tough enough.” Or “You can’t, you know, power through,” kind of thing. [ … ] Like, people can’t see what's going on, you know, physically. So, there's, yeah, that factor that makes it that much harder as well.

The hidden injury aspect of concussions also contributed to difficult decisions about allowing their teen to return to sport, as some parents encountered questions about why their teen was or was not back with their sport.

Theme 6: decisions about returning to sport

The prospect of returning to sport raised mixed emotions for parents as they struggled to balance their fears about re-injury with supporting their teen's desires. A few parents decided their teen would not return to play sport, and instead focused on their teen's long-term health and performance at school. One parent stated, ‘We have agreed to not to go back to sports. And we have agreed to just focus on school and her health,’ while another parent confessed, ‘I’m like ultra-paranoid now. Because we’ve kind of made the decision, you know, as parents, that if it happens again in cheer, we’re probably not going to let her go back.’

A variety of emotions followed a return-to-play decision for some parents, ranging from excitement for their teen who was finally back out playing, to angst about their decision, and to concerns of being judged by other parents. Return-to-play decisions were not taken lightly, as exemplified by these two parents:
[Parent 1] You try to be as informed as you can and you’re talking to doctors and they’re telling you things, but then outside people are saying things like, “You are crazy to ever let him play,” you know. I mean, so, you’re getting a lot of mixed signals. And I thought I was super, super cautious but there were still people who would say, you know, question, “Why are you letting him do anything at all?” So, it is a hard thing.

[Parent 2] We have told [son's name] that he can play football next year. We have had multiple conversations with [concussion clinic doctor] about that. We have consulted a neurosurgeon. We have, we feel like we have exhausted every venue that we can in making that decision. [ … ] So I feel like we’re taking a chance. I feel like we’re listening to our kid. I feel like we’ve done our research. I feel terrified still.

Parents were not alone in struggling with the decision of when and if their teen might return to sport—their teens did, too. According to some parents, their teens acknowledged potential long-term consequences of returning too soon and/or sustaining another concussion. One parent described how their teen came to this realization:
She said, “I’m okay with not playing … because I want to play again. I don’t want to risk it” she said, “I know if I go out there and play, even with my gear on. I get hit weird, or something, or something happens.” She said, “I know I could not play again. And I don’t, I’m not going to jeopardize that.”
Two parents explained how their teens were learning how to advocate for themselves after gaining an understanding of the impact of their injury. To illustrate, one teen's peer group pressured him to return to play and he responded by explaining the risk of a second concussion,
“Guys, do you want me to get brain damage the rest of my life or do you want me to be able to be around ya? [ … ] As much as it sucks and I hate it, I can’t come back until I can come back.”

Decisions about returning to sport were especially complicated for parents whose teens lied about their symptoms, as described in the next theme, because concussion symptoms were not always visible to parents.

Theme 7: being lied to about symptoms

Three parents expressed concerns about their teens hiding concussion symptoms from them. Two parents shared that their children, both of whom had prior concussions, hid a return of symptoms from them for two to three months of sport participation. One teen did not want to miss their senior year of basketball: ‘He knew that if he told us that he’d be done playing.’ Another parent described their teen as wanting ‘to be part of the team, be seen as cool, and accomplished,’ and was ‘very aware of … he wouldn’t be allowed to play football if he would have been honest with everybody.’ A third parent was dismayed when their teen declared that they would not tell their parent if they received another concussion. The teen proclaimed that ‘if I would have known it would have been all of this … that I would have had to gone [through] all of this, I wouldn’t have said anything.’

Theme 8: offering strategies and practical advice

When asked to share advice and to reflect on the strategies that they used throughout their teens’ recovery process, parents readily described ways to advocate for their teen and provide care and support. They strongly emphasized the need for parents to step in because not only are teens not yet adults, but they have also suffered a brain injury. This parent came to a realization about the parental role in recovery,
I would need to remember that, yes, he is a teenager and he's not a responsible adult. So I need to be the responsible adult and I think I would have gotten more involved in the site trainer and how that was all going.
Making oneself heard was a strategy suggested by this parent who explained, ‘Don’t be silent about it … if nobody is listening to you as far as the school or whatever then, ya know, make more noise. Because, it's your kid you’re fighting for and … they need to have you fighting.’ Another parent advised,
Stand up to the coaches and parents and whoever else it might be and just know that you’re doing the right thing for your child. And, stand up for them because it's much too hard for them to do it for themselves.

One parent shared that one way of showing care and providing support was by attending medical appointments with their teen, ‘As her mom now, I advocate for her and I support her and I go and attend these appointments with her in order for her to know that it doesn’t matter where she's at or what she's doing.'

Being patient and remembering your role as the parent were additional pieces of advice. Having patience with their teen and the recovery process was recommended by this parent, ‘Be patient. Just like we tell our kids. Be patient, ya know, it's an injury. You have to take it slow. As a parent you kind of have to do the baby steps with them.’ Parents also realized the importance of simply being a parent throughout this process, as this short quote illustrates, ‘Be adults. Don’t be their friends. Because their brain's too important.’ Another parent acknowledged the challenge of being in this role, ‘Parents just need to be tough [laughs] and not give in to their kid's wishes. … Your kid may get mad and stomp and scream and yell because they want to go do something and you aren’t letting them.’ One other parent echoed this sentiment, ‘You’re saying “no” a lot. You’re being the bad guy … you’re doing it because you love ‘em.’ One parent suggested a support group for parents would be helpful:
The way she acted and, at times, I would just think “what in the world is going on?” And then I would remind myself she has … you know, her brain has been injured. And her thinking process and her actions, and, you know. A support group really. I mean other than the doctor because it was all new to us. And I said [to the doctor], “Well, I’ve never done this before, you know, this is all new.” So maybe a support group.

Discussion

These eight themes are interconnected and illustrate the complexity of this injury with this population. The lived experiences of these parents illustrate that recovery restrictions can lead teens to face isolation and limited social contact, which contributes to frustrations, stress, and mental health concerns such as depression. Strong athletic identities added to a sense of loss. The difficulties associated with the hidden injury aspect of concussions, coupled with concerns about recovery, re-injury, and the future, weighed on parents as they contemplated allowing their teen to return to their sport. The intensity of these parents’ experiences came through clearly in this study. Most participants were visibly emotional during their interview, conveying a range of feelings such as worry, anger, frustration, loss, relief, and sadness through raised (or muted) voices, body language, and tears, as they recounted moments, conversations, and interactions. Having lived through the experience of advocating for their teen and navigating through many domains (e.g., medical, school, sport), parents offered practical advice and shared strategies for other parents and individuals who have the opportunity and/or the responsibility to support teens recovering from SRCs.

A key responsibility of parents was to support and/or enforce the cognitive and physical restrictions prescribed by health care providers – a difficult task according to many parents. They reported that these restrictions frequently led to their teens’ decreased, even minimal, social engagement with peers – both in-person and via digital devices (e.g., phones, computers), which is concerning given the importance of peers during adolescence.⁶ Research has shown that peers are an important source of social support for concussed teens^11,32 and concussed teens have described the negative impact of these restrictions on their social life.²⁰ Paradoxically, the need for social support for these teens is complicated by the need for cognitive and physical restrictions to support recovery – restrictions that frequently impede typical forms of social support (e.g., attending events, texting). Given the diminished peer interaction described by parents, it is not surprising that their observations about isolation led some of them to express concern about their teens’ mental health.

The isolation observed by these parents echoes the experiences of other teens who sustained concussions as reported in recent research.^20,23 Parents in this study highlighted the important role that sport played in the lives of their teens and illustrated that many teens had strong athletic identities. O’Rourke et al.³³ found that a stronger athletic identity was correlated with athletes’ reports of more severe symptoms and slower recovery. The isolation associated with the concussion recovery restrictions, coupled with a strong attachment to athletics, may have exacerbated these feelings.

The frustration, helplessness, and stress that parents described with respect to their teens and their own responses illustrate the complexity of parenting a concussed teen. Recent research suggests parents’ emotional experiences can potentially effect their children's outcomes, with one study showing a significant correlation between greater perceptions of parental stress and longer recovery times for their children.³⁴ Moreover, although parents readily talked about the advocacy they provided for their teen and the active role they took on to navigate through school, sport, medical, and family situations, they expressed dismay at not being able to end their teen's frustrations. Their ‘adult power’²⁰ (pp785) was not strong enough for this situation. Parents have important roles to play in supporting their teen through recovery, but they also experiencefrustration and feelings of helplessness in the face of an injury that is often hidden from sight and misunderstood. The suggestion by one parent to provide a support group for parents is important for health care providers to consider.

Because concussions are often referred to as hidden injuries, parents are reliant on their teens to report symptoms – as are medical providers, teachers, coaches, and athletic trainers who are involved with return-to-learn and return-to-play processes.¹³ Unfortunately, however, previous studies consistently show that adolescent athletes fail to report symptoms of their concussions.³⁵ Parents found themselves advocating for their teen in situations where others did not understand or were not educated on the impact of an SRC and/or denied that an injury had even occurred, which is similar to the experiences that parents in Daprano, Davies, and Berstein²³ had with school and athletic staff. In concert with a support group, parents may also benefit from a roadmap to help navigate through their teen's recovery process and effectively advocate for them.

The strategies and advice offered by parents illustrate the authority and emotional underpinnings of the parent role in supporting their teen's recovery. Parents noted the urgency of taking on a supportive and active, yet patient role by noting the developmental differences between them and their teen: parents need to ‘be adults’ and teenagers are not yet ‘responsible adults.’ The parent who explained that it is hard for teens to stand up for themselves captured an aspect of this developmental stage – teens are striving toward independence, yet are situated in positions that expect them to yield to authority, such as coaches and teachers who were, in this teen's case, not always supportive. Gagnon and colleagues’²⁴ earlier study found that adolescents want to be involved with their recovery and return to activities. However, a brain injury that impacts cognition and emotions, plus the hidden injury aspect of concussions, leaves teens in a precarious position if asked to advocate on their own behalf.

Limitations

We did not include gender in our analysis, which could be a limitation in understanding parent advocacy efforts. Societal expectations and assumptions about mothers and fathers, as well as youth sport participants, are gendered³⁶; thus, future inquiry into gender relations in educational and sport contexts could yield important insights. Likewise, we did not collect nor analyze participant demographic information such as education, socio-economic status, and family structure, all of which can shape parents’ experiences. For instance, two parents noted their significant investment in their teenager's recovery and pointed to their privilege in being able to do so.

Parents reported significant mental health issues and concerns for their teens experiencing prolonged symptoms from their SRCs. However, we did not ask whether their teenagers had sought out or received official diagnoses, nor whether they had existing diagnoses prior to their SRCs. Thus, our findings related to the magnitude of teenagers’ mental health issues, as well as any causal inferences resulting from SRCs, need to be interpreted within the context they were collected.

Participants in this study were referred to the researchers by staff from a local concussion clinic. Thus, results may only be transferable to parents who have had access to a concussion clinic or specialist. We utilized individual interviews with the parent or guardian most involved in the SRC recovery process to allow participants to comfortably share their experiences. Interviewing another parent or family members would provide other vantage points to consider and add layers of meaning about the recovery process. It is also possible that focus groups would have led to additional perspectives, as parents could have directly responded to each other's experiences. We interviewed the parents in this study one time. Given the dynamic nature of the SRC recovery process, multiple interviews may have revealed additional ideas or experiences and allowed for a more prolonged engagement with the participants.

Conclusion

Parents in our study shared their profound experiences dealing with their adolescents’ prolonged symptoms following an SRC. These experiences were not simply related to the physical symptoms of their child's concussion but more broadly and pervasively in how the injury affected the social, emotional, academic, and familial aspects of their child's and their own lives. Parents’ reflections exemplify the biopsychosocial model, which acknowledges that biological, social, and psychological factors all contribute to a person's illness and health.^14,37 This study focused on parents’ experiences with their adolescents’ recovery from an SRC, revealing the additional complexities of this developmental stage (e.g., strive for independence, parent-child decision-making). It is clear that future work in this area should adopt both a biopsychosocial and developmental approach to better understand prolonged recovery from concussions. Echoing Jones et al.'s²¹ perspective, utilizing these approaches will undoubtedly lead to better care and support for the teenagers and families who experience SRCs.

Participant Role	Teen (Gender)	Number of concussions mentioned	Age(s) or grade(s) mentioned	Sport(s) mentioned
Mother	Male	2	8^th grade	Football
Mother	Female	2	9^th, 10^th grade	Softball, Volleyball
Mother	Female	4	9^th grade	Cheer
Father	Female	1	11^th grade	Basketball
Mother	Female	3	Ages 11, 13, 17	Futsal, Volleyball
Father	Male	2	11^th, 12^th grade	Basketball
Mother	Male	5	4^th, 7^th, 10^th grade	Basketball, Football
Mother	Male	2	10^th, 11^th grade	Football
Grandfather	Male	1	9^th grade	Football
Mother	Female	1	Did not report	Cheer
Mother	Female	9	5^th, 6^th, 11^th grade	Soccer, Volleyball
Mother	Female	3	11^th grade	Track, Volleyball

Category of Question	Questions
Injury History	To get us started, can you give me an overview of your daughter's/son's injury and your experiences during recovery?
Navigating Systems	Can you talk about your immediate family's experience with this injury and the recovery process?
What about your experience with the doctors and other medical care providers?
What was your experience with your daughter's/son's sport team and coach?
Please talk about your experience with your daughter's/son's school, such as teachers, the principal, or other staff.
Can you talk about your experiences with other members of your community as you helped your child recover from this injury, e.g., extended family, neighbors, co-workers, other families associated with your daughter's/son's team?
Is there anyone else that you interacted with in this recovery process that we haven’t talked about, e.g., service providers, groups or organizations, individuals?
Advocacy Strategies	As you reflect back over your daughter's/son's recovery period, what strategies were successful in helping to support her/him?
What approaches did you try that were not successful?
Can you tell us what was the most challenging aspect of your daughter's/son's injury and recovery?
With the benefit of hindsight, is there anything that you would do differently now?
Advice for Others	What advice do you have for parents?
What advice do you have for immediate family members, including the concussed teenager?
What advice do you have for doctors and/or other health care providers?
What advice do you have for youth sport coaches?
What advice do you have for teachers and school officials?
What advice do you have for other members of the community, such as neighbors or co-workers of families?
Given the increased amount of media coverage about concussions, what advice do you have for people in the media who report on concussions?
Is there any other advice you would like to share?

Footnotes

Acknowledgements

The authors wish to thank the 12 participants in this study who graciously shared their time and experiences.

Data availability statement

Due to the nature of this research, participants of this study did not agree for their data to be shared publicly, so supporting data is not available.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article

ORCID iD

Shelley Lucas

Laura J. Petranek

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Parents’/guardians’ experiences with their adolescents’ prolonged recovery from a sport-related concussion

Abstract

Keywords

Method

Participants

Interview guide

Procedures

Data analysis

Findings

Theme 1: difficulties enforcing cognitive and physical rest

Theme 2: concerns about depression and isolation

Theme 3: observing struggles with athletic identity

Theme 4: feelings of frustration, helplessness, and stress

Theme 5: challenges of a hidden injury

Theme 6: decisions about returning to sport

Theme 7: being lied to about symptoms

Theme 8: offering strategies and practical advice

Discussion

Limitations

Conclusion

Footnotes

Acknowledgements

Data availability statement

Declaration of conflicting interests

Funding

ORCID iD

References