Good researchers with interesting research questions can come from a lot of places. Luckily for UBCO’s Psychopathology Lifespan and Neuropsychology (PLAN) Lab, they found the right person. Psychology student Mariza Micallef happened upon the PLAN lab through a grad student friend, and quickly became involved in Honours research, and now Undergraduate Research Award (URA) winning work studying the interaction of concussions, the healthcare system, and the pandemic.
Mariza and her supervisor, Dr. Maya Libben, wanted to know how people with Post-Concussive Syndrome (PCS) were navigating their treatment as the pandemic wore on. What Mariza found, in a word, was inconsistency. Concussions manifest in a wide variety of ways: two people with similar injuries can experience a wildly different complement of symptoms. And while the medical community is fully aware of that, Kelowna’s healthcare system hasn’t kept up. In addition, the way in which the pandemic affected the intersection of symptoms and treatments varied amongst the study participants.
By using an open and flexible interview system with almost 30 PCS patients from the Okanagan, Mariza was able to elicit a range of responses. Poor cognitive functioning, and long-term persistent symptoms were common in her respondents, though what exactly those symptoms were, varied. Plus, PCS patients used a wide range of coping mechanisms, including help from wellness apps, spiritual techniques, and social interaction.
And because of this, how the pandemic affected the patients varied as well. Mariza says there was about a fifty-fifty split between those who were seriously hampered by the world of COVID and those that weren’t affected. Many respondents didn’t notice much of a difference, given they were already isolated and undergoing sensory sensitivities. But meanwhile, many respondents found that support systems disappeared when many medical clinics, services, and support groups simply closed through the pandemic.
But several respondents also found the pandemic cut them off from social groups that helped them cope, which seriously hurt their treatment programs when the entire medical system moved online. Sensitivity to screens, and even prescribed avoidance of them, are common in PCS patients, and thus Zoom-mediated medical appointments stood firmly in the way of many people’s treatment. Mariza says:
“Going online was painful for them and wasn’t even worth it.”
But besides the range of symptoms and responses, Mariza did find some consistencies. Namely, many PCS sufferers found the healthcare system simply didn’t facilitate effective treatment of their symptoms. Many respondents found support from community health practitioners like psychologists, therapists, and neurologists hard to come by. Meanwhile, financial barriers existed for many. In both these cases, social stigma and pushback from the system on the perceived severity of PCS and mental health issues were major barriers. Several respondents stated that ICBC and WorkSafeBC were “resistant” to supporting PCS patients looking for different types of treatment.
But what Mariza found most consistently from her respondents was that the solution to the problem lay in the inconsistency of the outcomes. In other words, there is a need to individualize care for PCS sufferers. Many interviewees stated that post-concussive care acted like a checklist of small progressions until they’re deemed healthy. But their experiences rarely fell comfortably in line with the list. Mariza remarks we need a:
“better and more comprehensive care system, and this can be said for a lot of mental health and neurological disorders, by individualizing care rather than a checklist situation… everyone I talked to had such diverse experiences, something that helped one person was terrible for another. that seemed to be the biggest barrier to people besides financial issues.”
To best account for the incredible variation in experiences, treatment for PCS needs to be specific and caring for every single patient.
Recommendations for improving PCS health care were a major topic of discussion in Mariza’s interviews. In addition to personalizing care, Mariza said increased education and public awareness, in hopes of reducing stigma, would go a long way. British Columbia needs “an increased level of awareness of all of the struggles people with PCS go through,” including “more education for practitioners, hospitals, and even ICBC.” But beyond awareness, PCS treatment, and mental health care in general, needs cold hard cash: more money for support groups, more practitioners, and more financial assistance for those seeking extended medical care.
Mariza does say there are things PCS sufferers can do while we all wait for – or advocate for – the system to improve. First, finding social groups of people going through similar problems goes a long way. Social cohesion can validate someone’s concerns and reduce personal stigma in the healing process. PCS patients find it very difficult to find solidarity through the internet due to the aforementioned screen time issues, so in person social connection can remedy much of that isolation. Additionally, Mariza says, though it’s extremely difficult, being stubbornly persistent helps. Many of the most successful stories she heard involved patients who tried multiple medical options despite being turned away.
“If you keep looking, you will find a good doctor.”
Mariza’s current URA work has qualitatively assessed the range of issues surrounding PCS, but Dr. Libben and the PLAN lab are looking to assess more nuance surrounding the health care system in the Okanagan further. Meanwhile, Mariza is excitedly learning about neurophysiology, while also exploring her other research interests, such as a possible future including grad school to study education here at UBCO.