The COVID-19 pandemic disrupted daily life for nearly every individual on the planet, and its effects are still being felt today. Emerging evidence suggests that pandemic-related policies may have been particularly detrimental to individuals with chronic disabilities such as traumatic brain injury (TBI). For example, many individuals with TBI already find it challenging to participate in community activities because of their disability. “Lockdown” policies during the pandemic could have further limited their opportunity to be engaged in their communities.
Intrigued by this question, MRRI scientists Umesh Venkatesan, PhD, and Amanda Rabinowitz, PhD, worked with a team of investigators from the National TBI Model Systems (TBIMS) to study the effects of the pandemic on societal participation in data from TBIMS enrollees nationwide. Societal participation was self-reported by each participant with TBI over telephone and covered three domains: productive activity (e.g., household chores), social activity (e.g., spending time with friends and family), and community involvement (e.g., dining out). Because of the extensiveness of the TBIMS project, the researchers had access to data from over 7,000 individuals who either reported their participation level in the five years before the pandemic started (before March 2020) or during roughly the first year of the pandemic. The investigators compared participation levels between these two groups of individuals to determine whether there were any changes, and to identify any differences in the demographic or clinical factors that related to participation (e.g., age or disability severity).
The study findings, recently published in Archives of Physical Medicine and Rehabilitation, show that participation levels among TBIMS enrollees were quite stable in the five years leading up to the pandemic, and these levels remained so during the pandemic in two domains: productive activity and social activity. However, community involvement saw a modest, but significant, decrease among people with TBI during the pandemic. These findings are consistent with pandemic-related lockdowns that limited activity outside the home. People often found ways to do things around the house and to stay socially connected (e.g., virtually), but eating out or going to the movies was off limits for many. Furthermore, the study found no differences between time periods in the demographic or clinical factors that were related to participation.
It is encouraging that the pandemic does not appear to have greatly disrupted the societal participation of individuals with TBI. Still, researchers are cautious. The observed reduction in community involvement during the pandemic is important, and it is yet to be determined whether this reduction will affect long-term mental health and overall TBI rehabilitation progress. In other words, even if the pandemic placed similar restrictions on everyone, the personal consequences may be especially high for people living with chronic disabilities like TBI.
The study findings are a starting point for what may be a series of studies examining the pandemic’s effects on the lives of people with TBI. In fact, a companion study with which Drs. Venkatesan and Rabinowitz were also involved, examined mental health symptoms among people with TBI before and during the pandemic. That study arrived at many of the same conclusions as described above. Over time, TBIMS researchers will be able to gather and analyze data from before to during and after the pandemic, and from the same individuals at different points in their recovery, providing a more complete picture of health trajectories throughout the course of this remarkable time in our history. Ultimately, if researchers can characterize how the pandemic’s effects manifest in the individual lives of people with TBI, clinicians will be better able to anticipate, evaluate, and target treatment needs.