A qualitative study exploring the education provided to midlife women with persistent post-concussion symptoms

Abstract

Purpose

Between 20% and 40% of adults with a concussion experience a recovery period longer than the expected 3-month timeframe, which has been coined the term persistent post-concussion symptoms (PPCS; Cnossen et al., Popov et al.). Females (Kerr et al.) and older adults over the age of 40 are more likely to experience PPCS (Ryan & Warden). Early education plays a vital role in concussion recovery and preventing the onset of PPCS (Rickards et al.). However, there are few studies that have focused explicitly on the education that patients with a concussion and PPCS are receiving. Therefore, the purpose of this study was to explore how the education given to midlife women with an mTBI affected their experiences with PPCS.

Method

Five female participants (between the ages of 39 and 50) took part in one-on-one semi-structured online interviews to share their experiences with their concussion and PPCS and the education they received related to their injury. The interview transcripts were analyzed using thematic analysis to identify main themes regarding their experiences.

Results

The main themes identified related to (a) the variety and variability of education received, (b) the timing of the education in relation to their concussion diagnosis, and (c) the impact of the education and the process of getting information about PPCS.

Implications

The results indicate a need for more research and proper education delivery on concussion and PPCS management among health care professionals to improve the experiences and recovery of patients with an mTBI.

Keywords:

• Brain injury (traumatic)
• concussion syndrome
• client education
• qualitative research
• female

REVIEWING EDITOR:

• Daryl O’Connor, University of Leeds, United Kingdom

SUBJECTS:

• Physiotherapy and Sports Medicine
• Rehabilitation Medicine
• Disability
• Women

A mild traumatic brain injury (mTBI), also known as a concussion, is a disorder in which brain function is traumatically altered by an event (West & Marion, 2014). The estimated incidence of concussion in Ontario is reported at 11,153 per 100,000 residents per year (Collett et al., 2022). Symptoms of concussion can include somatic (headache, dizziness, fatigue, insomnia, tinnitus), cognitive (difficulty with concentration, decreased attention span, memory difficulties, slowed thinking), and emotional (irritability, anxiety, depression) concerns (Dwyer & Katz, 2018). Typically, recovery for a concussion can take from a few days to up to 3 months for symptoms to resolve (Leddy et al., 2012). However, between 20% and 40% of patients experience prolonged symptoms that extend past the 3-month time frame (Popov et al., 2022). The prolongation of symptoms is coined the term persistent post-concussion symptoms (PPCS; Cnossen et al., 2018). There may also be an underestimation of PPCS cases, with estimates ranging from 5% to 50% due to a lack of gold standard or consensus on the diagnosis and recovery of PPCS (Wilber et al., 2021). PPCS can have a significant impact on work, school, and daily activities which can reduce an individual’s quality of life (Popov et al., 2022). It is evident that concussions are prevalent, and that the reports of PPCS may be underestimated, which can have a negative impact on a patient’s daily life, thus making research on PPCS an important area of study.

Risk factors for Persistent Post-Concussion Symptoms

History of concussion and psychological disorders

A range of factors may influence the development of PPCS. A history of previous concussions and the time since previous concussion may present as injury-related factors for PPCS (Leddy et al., 2012; Rickards et al., 2022). Rickards et al. (2022) suggest that there may be a threshold in terms of the number of previous concussions or severity of brain damage in order to produce PPCS. However, previous concussions are not necessarily required for individuals to experience PPCS following a subsequent concussion; indeed, Kerr et al. (2018) noted that in their study of high school athletes, there was no significant differences in athletes that developed PPCS in terms of their concussion history. Hence, it seems that in some cases previous concussions may contribute to a higher likelihood of PPCS, while in other cases a lack of history of concussion may also contribute to PPCS occurrence. Thus, although it is not clear, a history of concussions may present as a factor in the onset of PPCS.

Another factor that may influence the onset of PPCS is psychological disorders that are either pre-existing or emerging from the incident (Mittenberg & Burton, 1994). Dwyer and Katz (2018) reported that mood and anxiety disorders are among the common predictors of PPCS symptoms. There is considerable overlap between symptoms of PPCS and symptoms of psychological disorders (Rickards et al., 2022) and it has been suggested that premorbid and comorbid factors, such as psychological disorders, may contribute to prolonged PPCS (Dwyer & Katz, 2018). It may be that at a certain point the symptoms experienced may no longer be caused by the injury itself but may arise from other premorbid or comorbid factors such as anxiety and depression (Rickards et al., 2022).

Age and sex

Personal factors such as the age of the patient can be associated with a longer recovery time (Dwyer & Katz, 2018; Popov et al., 2022); specifically, older age defined as being over 40, was associated with increased diagnosis of PPCS for patients with an mTBI (Ryan & Warden, 2003; Rickards et al., 2022). Indeed, early research by Rutherford et al. (1979) indicated that a higher percentage of older patients reported PPCS symptoms at the 1-year mark compared to patients between the age of 20 and 39 and patients under 20 years of age. On the other hand, younger age (under 18 years of age), also presents as a factor for PPCS onset (Leddy et al., 2012). Patients under 20 had the second highest reporting of symptoms at the 1-year mark (Rutherford et al., 1979). Hence, individuals younger than 20 and over the age of 40 may be at greater risk of having prolonged concussion symptoms.

Another personal factor that may influence PPCS is the sex of the patient. Studies of high school athletes (Kerr et al., 2018) and adults diagnosed with concussion (Packard et al., 1993) indicate that a higher percentage of females report prolonged symptoms compared to their male counterparts. However, other research suggests there is equivocal evidence regarding the role that sex plays in the likelihood of experiencing PPCS (West & Marion, 2014). Therefore, although there is still debate as to whether sex presents as a factor, there are studies that have observed a higher frequency of PPCS for females. Because there is a higher prevalence of PPCS cases in individuals that are female and are over 40, there is a need for research on this population in particular.

Treatment of PPCS

Traditionally, treatment for concussions has consisted of cognitive and physical rest until symptom resolution (Leddy et al., 2012). However, this approach has been empirically disproven and may actually be associated with delayed recovery (Leddy et al., 2012). The current treatment for concussion management consists of individualized treatment based on patient symptoms (Leddy et al., 2012; Rickards et al., 2022), interdisciplinary care, and cognitive-behavioral approaches (Rickards et al., 2022). An active rehabilitation plan through gradual aerobic exercise is also implemented (Simpson et al., 2021). Early intervention, as well as education, are important in the treatment of concussion in order to prevent the onset of PPCS (Rickards et al., 2022). However, the type of information that is given to patients plays a vital role for recovery, as false information may contribute to the development of PPCS and may exacerbate their symptoms (Rickards et al., 2022). Education on concussion management should include information about the symptoms of the concussion, reassurance of recovery, and symptom management strategies (Marshall et al., 2015; Rickards et al., 2022). Early education of concussion has been shown to be effective in preventing the onset of PPCS for those that are at risk of developing PPCS (Rickards et al., 2022). It is clear that education is important in the treatment for concussion and PPCS; therefore, research on education is needed to decrease the risk of concussions developing into PPCS, to improve patients’ long-term prospects of recovery.

Education on concussion

Although there is empirical research discussing general concussion education and guidelines, few studies have focused explicitly on the education that patients with a concussion and PPCS are actually receiving. A study by Sohlberg and Ledbetter (2016) that examined different treatment options and reported their outcomes on recovery of PPCS following a sport-related concussion provided psychoeducational support as a treatment option. Psychoeducational support consisted of concussion education, goal setting, and symptom monitoring, provided to participants from 2 to 36 months post-injury. Information provided through concussion education consisted of information on the mechanism of injury, the pathophysiology, and the recovery process. This information was delivered to the participants through handouts during each session that spanned over a duration of 9 weeks on average (Sohlberg & Ledbetter, 2016). The results of the study showed that individualized treatments that met each participant’s goals were most effective in leading to positive clinical outcomes (Sohlberg & Ledbetter, 2016). However, their study focused on a younger population of athletes ranging from 18 to 26 years of age. In addition, the study did not explore how the education treatment affected patient experiences with recovery. Another study examining the effect of psychoeducational education for adolescents who were between 1 and 12 months post-injury with PPCS reported the largest decline in symptoms following psychoeducation and sleep hygiene treatment sessions (Simpson et al., 2021). Treatment in the study began on average more than 2 months after their concussion and education was delivered through handouts including general information on concussion, symptoms, and recovery (Simpson et al., 2021). Although the study did focus on mostly female participants, the sample consisted largely of adolescents and there is a need for further research on the experiences of older females.

Methods of education delivery

Researchers have also examined different methods of education delivery on concussion outcomes. In one study, printed manuals that contain information on the nature of concussion, the expected symptoms and recovery strategies, and advice on gradual resumption of activities were given to adults with a concussion; at the 6-month follow-up, the intervention group reported fewer symptoms and lower symptom severity compared to the control group (Collett et al., 2022). Verbal delivery of information on concussion by a clinician or information from a booklet delivered 7 to 10 days post-injury led to a significant reduction in symptoms, symptom severity, less time off work, and improved community integration (Collett et al., 2022).

Another study also examined the effect of e-learning modules on concussion as a method of education delivery (PowerPoint presentations created by a neurology resident that follow the clinical guidelines from the Ontario Neurotrauma Foundation). Although the results did not reach statistical significance, the authors observed that there was reduced utilization of health care and improved quality of life for the group provided with the e-learning modules (Collett et al., 2022). However, participants in this study ranged from 18 to 65 years of age. Although there has been some research on concussion education initiatives, there still exists some gaps in the literature in terms of patients’ experiences of receiving education for their concussion. Research on education also tends to focus on younger populations or on athletes in a sporting context. Overall, researchers have not focused on patients’ perceptions of the education they receive and how it impacts their recovery. Therefore, there is a gap in the literature on older populations, and on patients’ perceptions of their education and its effectiveness on recovery.

The current study

To summarize, the development of PPCS is prevalent, especially in older midlife women, which has several potential negative outcomes for patients’ quality of life. Education on concussion and PPCS has been shown to be an important component of treatment, but there is a lack of research on education for older women and on patients’ experiences with concussion education. Therefore, the purpose of this study was to explore how the education given to midlife women with an mTBI affected their experience with PPCS.

Methods

This study adopted a qualitative approach situated within a constructivist paradigmatic position (Tamminen & Poucher, 2020) using one-on-one semi-structured interviews to explore adult women’s experiences of PPCS and the education they received regarding their concussion experiences. The benefit of this method is that there is an established interview protocol and outline, while also allowing for some flexibility and opportunities to change the direction of the interview to gain more insight on the participant’s experience that might not have been previously considered (Kirby et al., 2017).

Participants

The inclusion criteria for eligibility included that participants were female and between 40 and 60 years of age (±5 years), since a previous study showed that individuals aged 40 and over are more susceptible to developing PPCS (Rutherford et al., 1979). An extreme case sampling method was used to recruit participants that displayed characteristics of interest (Kirby et al., 2017), which included women over 40 who have or are experiencing PPCS to learn about their experience. Six participants were recruited for the study, but one participant dropped out since they expressed not feeling well the day of the interview. A total of five female participants between the ages of 39 and 50 (M_age = 46 years, SD = 4.5) participated in this study. Participants identified as White/Caucasian (n = 5) and lived in Ottawa (n = 3) and Toronto (n = 2) in Ontario, Canada. Participants reported their marital status as married (n = 5) and had completed a college or university degree (n = 5) (see the Supplementary File for anonymized participant profiles.)

Data collection

The study received ethical approval from the University of Toronto Health Sciences Research Ethics Board prior to beginning participant recruitment and data collection. Recruitment began on 4 January 2023, and concluded on 30 January 2023. To recruit participants, emails were sent to concussion clinics to ask for permission to put up a poster at their clinic for passive recruitment. Social media posts on Twitter and Facebook were also used to recruit participants. Interested participants contacted the researcher directly through email or direct message on social media to discuss involvement. Participants were also screened prior to taking part in an interview to ensure they met the inclusion criteria. An information letter was sent to participants who confirmed their interest and were eligible to participate indicating the purpose and background of the study and what the study would entail.

Semi-structured interviews were conducted between 31 January 2023 and 16 February 2023, and ranged from 53 to 82 min (M = 68 min) and were recorded with consent from the participants for further analysis. All the interviews were conducted by the first author, who was a female undergraduate research student. The participants had the option to conduct the interview either in-person or online through the Zoom video call application based on the participant’s preference. The option for an online interview is beneficial in creating more flexibility in terms of organizing meetings and reaching a wide range of participants geographically (Kirby et al., 2017). All participants opted for a one-on-one Zoom interview for convenience and geographical reasons. Participants had the option to have someone with them during the interview if needed, but all participants chose to conduct the interview alone. In the semi-structured interviews, an interview guideline was followed with questions prepared beforehand. A pilot interview was also conducted before the interview process on 6 January 2023, to test the questions. At the beginning of the interview, the study was introduced by discussing its purpose and the expected length of the interview (Kirby et al., 2017). Prior to beginning the interview, informed consent was obtained to record the interviews through the recording feature on Zoom. The interview began with warm-up with questions regarding their day and to get to know the participant, and to ask if they had a history of previous concussions. Further questions asked participants about the personal and situational factors that influenced behavioural and emotional responses to their concussion, including adherence to rehabilitation. The goal of the questions asked during the interview was to learn about the participant’s experience with PPCS and how the education they received about their concussion had affected their experience. Questions were asked about when they received education about mTBI and PPCS, who delivered the education, how the education was delivered, how the suggestions have helped or not helped them, how they felt post-injury, how they felt having attained PPCS, and their motivation to adhere to rehabilitation procedures. At the end of the interview, participants were provided with resources for concussion and mental health supports.

Data analysis

Following the interviews, each interview was transcribed verbatim so that it could be coded for further analysis. There was a total of 99 pages transcribed from all interviews combined. Transcription was completed through the Otter.ai transcription software and then reviewed by the first author to ensure accuracy and verbatim transcription. A thematic analysis approach was used to analyze the data and identify the common themes from the interviews. This approach can address research questions examining people’s lived experiences and interpretations of a specific phenomenon which is relevant for this study.

The coding process entailed reading each interview transcript and assigning a word or phrase to summarize a portion of the text to create a code (Kirby et al., 2017). Once all codes were identified, they were put into a codebook that provided information on the code itself, the frequency of mention of each code, and the definition of the code (Kirby et al., 2017). The coding process was repeated to capture any information that was missed or left out from the first round of coding (Kirby et al., 2017). After identifying the codes, themes were generated from the codes by identifying interrelationships between codes (Kirby et al., 2017). When the connections were made, the dominant themes were identified, being the themes that were mentioned the most frequently and had the most coherence for the participants’ experiences (Kirby et al., 2017). After the dominant themes were identified, a description and analysis of the themes through the cognitive appraisal theoretical framework was conducted. This included describing the theme and their constitutive codes (Kirby et al., 2017) and connecting the themes back to the research question. From the constructivist positioning of this study, it is not possible to fully “achieve” saturation, as “analysis can always be deepened or extended” (Mayan, 2023, p. 151). However, the results are strengthened by the focused aim of the study, drawing on rich information provided by a cohesive sample of participants with a shared experience, and by developing idiographic profiles of each participant’s experience (see Supplementary File) and engaging in cross-case analysis to illustrate similarities and differences in the participants’ experiences (Malterud et al., 2016).

Results

Concussion history and PPCS symptoms

The main concussion symptoms participants experienced were head pressure, sensitivity to light and sound, trouble processing and focusing, vision issues, and trouble with daily activities. Common PPCS symptoms were a continuation of concussion symptoms, particularly head pressure, sensitivity to sound, and physical and cognitive fatigue. Participants reported no formal previous history of concussion, but four participants reported a potential previously undiagnosed concussion. One participant was previously diagnosed with anxiety and depression before their concussion and reported no change post-concussion. There were three diagnoses for anxiety after their concussion, two diagnoses for depression, one diagnosis for post-traumatic stress disorder (PTSD) and one report of anxiety and obsessive-compulsive disorder (OCD) which had not been diagnosed. Other confounding conditions that may have affected the participants’ experiences of PPCS included pregnancy, tinnitus, and serotonin-syndrome.

Regarding the education that participants received and its impact on their concussion and PPCS experiences, three key themes identified during the analysis, including: (a) the variety and variability of the concussion and PPCS education received, (b) the timing of the education, and (c) the impact of the education on patients with PPCS.

Variety and variability of the education

Across all participants, they received information and education about concussions and PPCS from a wide variety of sources, and they also reported a wide variability in the type of information or education they received.

Multiple sources of information

Participants consulted a wide variety of specialists and resources to receive care and concussion and PPCS education. In terms of primary health care professionals (HCP), the first person that participants consulted after their concussion incident was a doctor. Participants either saw their family doctor, an emergency doctor, or a resident doctor if their family doctor was not available. There was wide array of secondary HCPs or specialists that women found and consulted: physiotherapists, occupational therapists, neuro-optometrists, chiropractors, acupuncturists, kinesiologists, neurologists, naturopaths, psychotherapists, cranial specialists, audiologists, and sport medicine clinics. The array of HCPs consulted by participants showcases the complexity of concussions and how it impacts multiple components of the body. Participants also used a variety of external resources, including books, a social media concussion support group, online resources, and their social circle made up of friends, husbands, or mentors with previous concussion and PPCS experience. The multiple resources that participants consulted could reflect the lack of specificity and direction they were given to manage their concussion, resulting in participants trying to gather any information they could access. The most useful education sources that participants found were the social media concussion group, books, physiotherapists, and psychotherapists. In terms of the least helpful sources, sport concussion clinics and chiropractors provided mixed experiences for participants and the family doctor was found as the least helpful.

Different types of education

Participants reported receiving varied types of education and information about concussions and PPCS. Firstly, concerning their doctor as a source of information, most participants indicated receiving limited or no education from their doctor, aside from receiving a concussion diagnosis and then a rest prescription. From the collective womens’ experiences, in general the doctors were not knowledgeable on concussions. Some doctors were honest in telling the participants that they did not know anything about concussions and simply provided participants with a rest prescription consisting of time off work, no technology, and no physical activity: “Do nothing for three days, you turn off your cell phone, don’t watch TV, don’t exercise, you do nothing for three days” (Carrie). If participants were given information, it would mostly consist of a rest prescription, which conformed with previous literature and previous concussion management. Each subsequent doctor visit would also be comprised of the same rest prescription. Because participants did not receive much information from their doctor, they had little guidance on how to proceed. Furthermore, doctors did not provide participants with referrals or resources that they could consult to receive more specialized care. Two women indicated receiving some additional information from their doctor either verbally or through a pamphlet, but explained that the information they had received did not make them feel more knowledgeable about their concussion because it consisted of already known information or information that could have been found with a quick search online.

The education participants received from the multitude of HCPs was mixed, but overall, the specialists provided participants with concussion education that aligned with the current literature on management of concussion. Certain specialists provided education that emphasized the importance of gradual exposure to stimulus and a gradual return to regular activity. For instance, an audiologist explained to one participant who was reliant on earplugs that earplugs can be harmful in recovery by increasing their sensitivity to sound and encouraged her to gradually decrease the time she used earplugs to build her tolerance to sound and decrease her sound sensitivity. Participants reported that specialists were able to provide education specific to their practice and helpful in their recovery:

The neuro-optometrists that would assess me, they- they really helped me see how the vision system accounts for so much of the brain energy and just like showed me, like, I had like six or seven things that weren’t working, like my focusing system, my- my convergence and divergence weren’t working very well, my periphery wasn’t working well, things like that. (Krystal)

After providing education, specialists provided exercises targeted to help restore participants’ function and reduce their symptoms. Participants also received lifestyle strategies to aid in their recovery such as planning and pacing or energy conservation strategies to manage their day.

Some women had negative experiences with HCPs, which participants attributed to not feeling listened to, not feeling understood, nor supported by the specialist. For instance, one participant talked about her experience at a sport concussion clinic:

They basically said to me, the doctor said, ‘Well, you know, sometimes this is just the way it is, like this is this- this might be it’ and I was not doing well then. And that was really not what I needed to hear. I think it was false information. […] that’s like eliminating any possibility of hope. (Krystal)

Social media concussion support groups and the participants’ social circles provided them with knowledge drawn from lived experience that was reported to be beneficial. Personal perspectives from the social media support group and mentors consisted of people with previous experience with concussion and PPCS who shared their experience, the therapies they tried, what worked for them and what did not work. Participants consulted online resources and social media groups when their symptoms were not improving, when their doctor could no longer help them, and while waiting for referrals or admissions to see specialists. For participants, personal perspectives were helpful in providing them with some guidance to begin their recovery process. Social media groups also allowed the women to interact with people who have experienced concussions and PPCS by asking questions, supporting each other, and validating their experiences. The personal perspectives that women received from their social circle was information that their circle researched and shared with participants for strategies they could try to cope with their symptoms: “My husband researched that blue light was an issue so he got me blue light filtered glasses, which really helped actually they cut down my symptoms tremendously […] again, all my husband’s research” (Allison). Thus, participants found the personal perspectives to be a useful source of education in getting them started with their journey to recovery.

The books and online resources that participants consulted provided helpful general concussion education. Specific online education that was mentioned as helpful were the Sunnybrook Hospital and the Parkwood Institute at St. John’s concussion information: “I think it was Sunnybrook Hospital with the concussion information […] And I’m like, Okay, now I know what’s wrong with me” (Krystal). Online concussion programs were also consulted, which had modules, guest speakers, and question and answer sessions. This education was useful for women in helping them to understand and figure out what they were going through. “Because if I- if I hadn’t found those [online programs], I am sure I would still be lying in bed, wondering why I’m not getting better” (Stephanie). Hence, these resources and information aided in creating a greater understanding of concussion and validate their experience.

Timing of the education

The timing of the education referred to the time it took participants to see their HCP to receive concussion education from the moment of their concussion incident. Participants visited their doctor shortly after their concussion incident (between 1 and 4 days after their concussion incident). At their first doctor visit, participants received a concussion diagnosis. However, the education that they received at their initial doctor visit was limited, and the time that it took participants to receive more substantial education based on current concussion literature was delayed. Most women did not receive concussion education from a specialist until after they had reached the PPCS phase, which was 3 months after their concussion incident. The earliest a participant saw a specialist was 5 weeks post-concussion.

Participants attributed the delay in receiving education to several reasons. The first was due to the lack of education provided from their doctor. Participants had followed their doctor’s rest prescriptions thinking that they would recover but were not provided with additional concussion management education after the rest period, which prevented them from seeking further care: “I had faith in her that [the doctor] knew what she was doing” (Carrie). The second reason was the cost of seeking further care: “It’s expensive and I was worried I wouldn’t be able to get it covered so I waited until October […] So it took me up to six months. A lot of trial and error” (Krystal). The third reason was the trial-and-error process of trying to find a specialist that worked well for the participants. This trial-and-error process was further exacerbated by the fourth reason of long referral and admission into clinic wait times: “At the 15-month mark, I got an appointment with the brain rehab people at the hospital here. […] So, you go on a waitlist and when you reach 15 months, then you get seen by the brain people” (Allison).

But again, that’s because referrals take so long and whatever. But it can also be if you’re not getting the education, you don’t know what you’re dealing with, you’re struggling to look things up yourself and finding answers and solutions. (Jocelyn)

The referral or clinic admission wait times was the most-cited barrier for receiving care and education. Thus, delayed care from a specialist impeded participants’ receipt of proper education on concussion, which potentially influenced the length of their recovery.

Impact of the education

Three key impacts from the education participants received were identified: (a) the need for self-directed research and self-advocacy, (b) questioning the medical system, and the (c) importance of listening to their bodies.

Need for self-directed research and self-advocacy

The general impact from the education that women received, or the lack thereof, was that women had to do their own research, with the help of their spouses, to find education, therapies, and solutions for themselves: “When [the doctor] knew nothing like that’s when I started looking on my own and digging, and thankfully Sunnybrook Hospital has a lot of concussion information on the website and Parkwood Institute at St. John’s in London has lots of information” (Stephanie). Participants had to take initiative in their care, and they attributed taking action in their care and self-advocacy to be a large part of their recovery:

I will say that I’ve only experienced the improvements that I have, because I did what I could in trying to get information but also try different things that are considered alternatives like the glasses, like functional neurology treatment that I’ve had through the chiropractor and stuff like that. (Jocelyn)

Women also indicated needing to take initiative because they did not feel supported, understood, or being taken seriously by their doctor and different specialists. The long wait time for admissions into clinics was also a reason that participants began to do their own research to educate themselves while they waited to be accepted to see a specialist or a clinic. Thus, the responsibility fell on the patient to do their own research and advocate for themselves to find their own solutions, which often occurred without adequate support from their doctor.

Questioning the medical system

The variability of information that participants received led them to question the knowledge they received about concussions, and about the medical system as a whole. One way participants questioned the medical system was regarding their doctor or specialists’ lack of knowledge on concussion. This resulted in participants being confused and shocked because they felt concussions should be well-researched and understood by doctors, as they are common medical events and can have a large impact an individual’s life. Stephanie expressed disbelief when detailing a particular interaction she had with a resident doctor who was newly graduated but did not know proper concussion protocol or management. This situation led her to doubt the medical system if graduating medical students are not being taught about concussion and the potential impact on other concussion patients who might be in similar situations in developing persistent symptoms. The women in the study also questioned the education and prescriptions they were receiving:

That was her- her Bible: ‘do another three days and no technology’ and then you talk to other people, and they’re like ‘you can’t just do three days of nothing and then the fourth day go back to normal.’ Right? […] it’s the appointments after that, that were not making sense to me. You know, like, this is not going away. I’ve done- I’ve done what you’ve asked me to do. (Carrie)

Carrie also detailed an experience in which her doctor had indicated that after her 3 days of rest, she could proceed with her normal activity, which consisted of a high intensity interval training (HIIT) exercise class. The participant followed the doctor’s advice and after her HIIT class, her symptoms had been exacerbated. Subsequently, the participant was left questioning the doctor’s information about how to proceed with daily activities.

There appeared to be a gap between the previous knowledge and prescriptions about concussion recovery and the currently accepted knowledge, which contributed to participants’ distrust in the medical system. For one of the women, the sudden change from the old concussion management to the currently accepted concussion management guidelines led her to question the education she was given:

We used to think this, now we think this, then you’re like- go like, ‘Why? What changed?’ Kind of like, are you jumping all over the place? Are you just guessing? You know, and what- I think that creates a gap. In terms of yes, you’re providing information, but it also makes you question that information. (Jocelyn)

Thus, the shift in the education led her to question the information she was receiving and its credibility, and she was unsure about what advice she should be following.

Listening to your body (for the patient and HCP)

During participants’ recovery, they learned to listen to their body to dictate the extent they can push themselves for progress. This concept was especially significant for participants’ return to work. Most women, after their rest prescription, immediately returned to work without any accommodations or guidance, even though they did not feel okay, which impacted their work performance and their recovery: “When I hit my head, I just I knew something was not right and I felt different. I shouldn’t have gone to work for two months. But at the time, I just didn’t know, like I had no education whatsoever” (Krystal). Another participant said:

I did my three days and then I went back to work, but I was not good. I should not have gone back to work because I still had pain. The computer still bothered me, the lights still bothered me […] I was not a good employee, you know, not at all. (Carrie)

Participants who returned to work or daily activity right after their rest prescription expressed regret in doing so, but indicated they did not have the education at the time to know what they were supposed to do.

Participants learned that there was no clear threshold to determine when to stop before exacerbating their symptoms and hampering recovery. Instead, they indicated they developed an awareness through listening to their bodies and their symptoms, which could not be dictated by a specialist: “I wish she [the doctor] would have said ‘listen to your body’. Like do what your body tells you. Not what I’m telling you” (Carrie).

I was just trying to push through my symptoms, which they tell you to do to a certain point, but nobody can tell you when the cutoff is. So, I think that’s the that’s the hardest part […] I didn’t have the education for that at the time. (Jocelyn)

Through living with the concussion and its symptoms, the women were able to learn through time what that threshold is and gauge how far they can push their return to daily activities.

The concept of listening to your body also applies to HCPs. Women in the study emphasized that every concussion is different, thus a standard approach to treating and managing a concussion cannot be undertaken. Rather, HCPs should be working with the patient and taking into consideration their individual differences to provide care tailored to their needs: “Well consider them…because I don’t think they’re being considered […] Each concussion is an individual puzzle, I don’t think that’s considered which I think it should be” (Jocelyn). One participant shared the treatment she received from a speech language pathologist was helpful because the treatment was individualized and tailored to her needs:

I saw a speech language pathologist and she was probably the most helpful because she helped me with strategies, helped me figure out how to learn or how to read and retain information, like tricks and tips like that. Everyone else was kind of like their cookie cutter approach, like this is how we treat it, this is how we’ll treat you. And if anything else is outside that, well too bad. (Stephanie)

Therefore, it is important not only for the patient, but also for the HCP working with them, to listen to the patient’s body to guide recovery progression.

Discussion

The purpose of this study was to examine midlife womens’ perceptions of the impact of the education they received on their experience with concussion and PPCS. The participants received a wide range of information from various specialists, and received the majority of information and education only after they reached the PPCS phase. This resulted in patients needing to do their own research on concussion, creating distrust in the medical system, and providing an opportunity for growth in needing to listen to their bodies to guide their recovery.

Delayed education was identified as a significant factor that impacted womens’ recovery from concussion. Heslot et al. (2021) indicated that proper concussion management involves a brief period of rest for 20–48 h, then a gradual increase in activity and therapeutic interventions to address patient symptoms. The intervention should begin within 3 months of concussion injury to prevent PPCS and symptom chronicity (Heslot et al., 2021). However, in the current study, although participants followed the rest prescription, they ended up following the rest prescription for an extended amount of time and did not begin to progress their activities until after they had reached the PPCS phase. This may have occurred due to the fact that they did not receive proper education on concussion management until they saw a specialist, which did not occur until at least 5 weeks after their concussion. Thus, in addition to the timing of education delivery, the timing of proper education reception is crucial for recovery, especially during the early phases of concussion. A study from Kontos et al. (2020) indicated that earlier care was associated with shorter recovery time for athletes that were diagnosed within a week of their injury, compared to those diagnosed two to 3 weeks post-injury. They attributed the difference to be due to the earlier initiation of active rehabilitation such as progression of activities and physical therapies targeting the vestibular, vision, or cervical systems (Kontos et al., 2020). Similar results were reported by Eagle et al. (2020), who found that a group that visited the clinic within a week of injury were cleared for sport 8 days earlier than those who visited the clinic 8–20 days after injury. If patients are not receiving clinical guidance during this timeframe, they may be engaging in counterproductive recovery strategies, namely strict rest, excessive physical activity, early return to sport, or waiting for their symptoms to resolve spontaneously (Eagle et al., 2020; Kontos et al., 2020). These behaviours can prolong recovery by delaying the time they start active rehabilitation and targeted therapies (Eagle et al., 2020). Women in the current study did consult a doctor within a week of their injury, but were not provided with current evidence-based concussion management strategies, thus were engaging in counterproductive strategies which prolonged the time they started their active rehabilitation and resulted in prolonged recovery and the development of PPCS. Therefore, not only is it important for patients with a concussion to seek early care, but also receive education aligned with current literature on concussion to minimize the risk of developing PPCS.

For patients to receive education aligned with current concussion literature, doctors and medical students need to be informed on up-to-date concussion management guidelines. From the experiences of the women in the current study, it was evident that their doctors were not knowledgeable on current concussion management or were knowledgeable on previous concussion management that should no longer be used. Moreover, the results also indicated that resident doctors or newly graduated doctors may not be sufficiently educated on current concussion management. Results from Gardner and Heron (2022) study indicated that Canadian universities dedicated on average 30 min of education on concussion. After a curriculum redesign in 2016, concussion education increased from around 4 h to 11 h (Gardner & Heron, 2022). However, a significant portion of medical students are still not receiving any concussion education with four out of fourteen universities not teaching their students on concussion (Gardner & Heron, 2022). Having the first point of contact that patients see after concussion be informed on concussion management is vital for patient recovery. This is supported by Jervis et al. (2022) who found that medical students in Scotland are not being adequately educated on concussion which can lead to misdiagnoses or improper treatment. Given the increasing incidence of concussions, as well as the long-term effects concussion and PPCS may have, it is critical that medical students and doctors be sufficiently educated on concussion to provide proper treatment and recovery (Mathieu et al., 2018). In addition, almost all medical specialties will encounter a concussion case, thus it is important that all medical professionals be prepared to manage these cases (Gardner & Heron, 2022). This point was evident from the current study that displayed the various HCPs patients consulted. The multiple specialists that patients sought out indicates the complexity and the multifactorial aspect of concussions on various systems and functions in the body. Hence, specialists should also be trained and properly knowledgeable on concussion for proper and quick recovery.

Women also began to question the medical system from the lack of education or the outdated education they received from various HCPs. In the current study, even if doctors were honest in telling patients they did not know about concussions, it nonetheless created distrust for the patient. This aligns with a study by Mikesell and Bontempo (2023) who examined women’s experiences with endometriosis; the authors found that the patients doubted their HCP’s competency with regards to their treatment recommendations that were not evidence-based or were outdated. McKinstry et al. (2006) indicated that patient trust in doctors comes from a doctor educating their patient, maintaining confidentiality, and providing the best care possible for their patient. As a result, instances in which these are not met can lead to a lack of trust in doctors or even the medical system. In addition to the lack of information they received, women in the current study also began to question the medical system when they received conflicting information from different HCPs. Once the women realized that their symptoms did not improve following extended rest prescriptions, they did their own research, leading to them to stray from their doctors and led them to question the education provided from the medical system. This finding is supported by Mikesell and Bontempo (2023) in which women had to take individual action and do their own research on endometriosis, as they perceived their HCP lacked competency regarding their treatment. In addition, Chandra et al. (2021) found that a majority of patients reported having partial trust in their doctors, and over 37% of patients felt that their doctor would “pretend to know things when they really don’t,” leading patients to question their doctor’s competency. Hence, although most patients in the current study had previously trusted their doctor before their concussion, concerns about poor information and a perceived lack of competency may lead to a lack of trust in doctors and health care systems.

In terms of doctor communication, women began to distrust their doctors or HCPs and reported negative experiences from a lack of feeling understood or supported. Particularly, women reported negative experiences when HCPs continued to push them when it did not feel right for their bodies and when therapies were not tailored to their specific needs or taking their individual factors into consideration. This finding aligns with Mikesell and Bontempo (2023) who reported that the women felt invalidated and dismissed from the HCPs and wished that the HCPs would listen to them. Torishima et al. (2020) found that when doctors solely provided factual information without taking patients’ feelings into consideration, it created disappointment and distrust for patients. Additionally, Campbell et al. (2022) found that parents whose child suffered from a concussion preferred to consult a medical expert for information. However, parents indicated that the information they had received from their doctor was brief and the information sheets were not helpful compared to the information sheets from a concussion specialist (Campbell et al., 2022). These findings align with the current study in which women received limited to no information, and if they did receive information verbally or in the form of a pamphlet, it was not effective in translating knowledge about concussion recovery. Thus, communication between HCPs and patients is key in creating and fostering a positive relationship, translating knowledge, and maintaining trust.

The internet and online resources were common sources of information women used to obtain information on concussion. Participants indicated certain online resources to be the most helpful in educating them in their recovery, which confirms previous research by Campbell et al. (2022) who found that parents also heavily utilized the internet for information on concussion. The use of online sources also supports previous research by Beaton et al. (2020) who found that patients chose to use online resources because they believed their doctors would not have time to see them or were not up to date on the current recommendations. However, although the internet was useful for women in the current study, it also presented a challenge due to their symptoms being exacerbated and affecting their ability to retain information. Beaton et al. (2020) noted similar findings where patients reported the use of the internet to exacerbate their symptoms. Thus, it is important for doctors to provide patients with reliable resources or referrals to provide proper guidance in the patient’s recovery (Beaton et al., 2020; Campbell et al., 2022) in addition to resources with a format that is appropriate for their target audience. A suitable format for education on concussion could be an educational support group. For example, Sehhatie Shafaie et al. (2014) found that having a support group for women with menopause was helpful in translating knowledge on menopause and helping reduce their symptoms to improve overall women’s health. Although doctors are not expected to be experts on all medical issues, they need to be able to provide sufficient education on concussion to patients or provide them with proper referrals or resources early on to inform their care.

An interesting finding in the study was womens’ appreciation for peer information online or from their social circle. Although the accuracy of this information cannot be guaranteed, participants found the information to be helpful in providing support and relatability. This is supported by Honey et al. (2020) who found that research from lived experience was helpful for people with mental health issues when presented in a format that is suitable for them. Campbell et al. (2022) explained that shared peer support can have a degree of emotional power that captivates attention, resonance, and change which can also help facilitate knowledge retention. However, Beaton et al. (2020) found contradicting results in adult populations, who favored expert opinion compared to anecdotal evidence online because they perceived anecdotal information to be overwhelming and less specific to their situation. Similarly, women in the current study did indicate that personal perspectives can have negative impacts because not all information shared was positive or useful. Because personal perspectives online and particularly on social media are not controlled, both positive and negative experiences can be posted which could be counterproductive to recovery. In the current study, the women said they simply scrolled past the posts they found less helpful for their recovery to filter through the posts. Honey et al. (2020) also cautioned that anecdotal education, even with the presence of a peer worker and trying to create an empowering perspective, may lead to patient distress. Altogether, personal perspectives may provide some benefits for concussions populations, but precautions should be taken when using this information.

The results of the current study should be considered in light of some limitations. The study focused on women, therefore further research could benefit from examining male’s perspectives on concussion and PPCS to consider possible gender differences. The sample size was also small which limits the findings and the generalizability of the results. The study also relied on participants’ retrospective recollection of their concussion and PPCS experience, thus future research may benefit from exploring participants’ experiences prospectively over the course of their recovery process. In addition, to explore the impact of the education even further, a comparison study could be conducted examining the education received by patients with a concussion versus patients with PPCS. Given the usefulness of online resources and personal perspectives, further research could be conducted on how patients assess what information is helpful and what may be harmful for their recovery when consulting online. Finally, the participants were all located within Ontario, Canada, which may differ from other jurisdictions in terms of health care systems, referrals, and access to specialists for concussion treatment.

In conclusion, the aim of the study was to learn and understand the impact that the education midlife women with an mTBI received on their experience with concussion and PPCS. From the findings, the women received various sources of information and types of information, and the timing of proper education reception was delayed. This resulted in participants doing their own research to educate themselves, it led them to question the medical system, and provided an opportunity for growth and discovery in listening to their bodies. This study contributes to the literature on education for concussion and PPCS by demonstrating that in addition to early care, the quality of the education provided at that timepoint is crucial for participants’ recovery experiences. The study also highlights the usage of personal perspectives for adults with concussion and PPCS, which has previously been shown to be beneficial for pediatric populations with concussions but could also be implicated in future care for concussion and PPCS in adults. In addition, the results of the current study highlight the importance of educating primary and secondary HCPs and medical students on current evidence informed guidelines regarding concussion management for appropriate patient recovery. Moreover, HCPs should provide individualized care that considers each patient’s unique situation by listening to the patient. These approaches could aid in providing care that is tailored to their needs to improve the chance of effective concussion recovery and maintain a good doctor–patient relationship.

Authorship statement

Jaynee Lie: Conceptualization, Methodology, Formal Analysis, Investigation, Data Curation, Writing – Original Draft, Review & Editing, Project Administration. Katherine Tamminen: Conceptualization, Methodology, Writing –Review & Editing, Supervision

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

The ethical approval for this study did not include consent for data archiving in an open repository; as such, the participants did not provide consent to store and share their full interview data from this study. The data are available upon reasonable request to the second author, following APA ethical guidelines.

Additional information

Notes on contributors

Jaynee Lie

Jaynee Lie is a first-year master’s student in the Physiotherapy program at the University of Ottawa. She completed her Bachelor of Kinesiology at the University of Toronto in the Faculty of Kinesiology and Physical Education in 2023.

Katherine A. Tamminen

Katherine A. Tamminen, PhD, is an Associate Professor in the Faculty of Kinesiology and Physical Education at the University of Toronto. Her research draws on qualitative and quantitative approaches to examine experiences of mental health, stress, coping, and emotion regulation in sport contexts.