Picture March 2020. With just about everything shut down, you struggle to find the motivation to leave the house—and if you’re unable to drive, the struggle is even more difficult. For a traumatic brain injury (TBI) survivor, this is nothing new. As TBI survivor Jodie Bacon recalls, after acquiring her TBI, her social interactions “stopped in an instant.” She says, “my friends were still busy with their lives, which emphasized my lack of life. It felt like I no longer belonged anywhere. If I had the energy to get out, chances were things would be too noisy so anything organised by someone else wasn’t suitable” (The Headway Foundation, 2021).
Jodie is not alone. Research by The Headway Foundation, a charity that provides services and support to those affected by TBI, found that “more than 70% of brain injury survivors have seen deterioration in their social life following brain injury” (Headway 2021). This phenomenon is one of the manifestations of social isolation—“the objective state of having few social relationships or infrequent social contact with others” (National Academies of Sciences 2020)—one of the most crushing yet under-addressed potential consequences of traumatic brain injury.
Harvard Synapse is a student organization dedicated to raising awareness of and combating the dramatic detrimental effect of social isolation on survivors of TBI. It is our hope that this article will fulfill our mission by helping students understand why survivors of traumatic brain injury are especially susceptible to social isolation, how social isolation can affect the rehabilitation and wellbeing of individuals who have sustained a TBI, and why the social interventions we offer are promising and impactful.
First, the pervasiveness of social isolation in the community of TBI survivors may be attributed in part to the insufficient support provided to individuals with TBI after acute treatment of their injury. As Dr. Amanda Rabinowitz, director of the Brain Injury Neuropsychology Laboratory at the MossRehab Research Institute, notes, “people get a lot of rehabilitation care in that first six months to a year, but after that, we find that there are financial barriers to seeing a therapist in the office as frequently as we would like” (Hill 2021). As treatment wanes in the months after injury, individuals with TBI often find themselves struggling to manage their symptoms, which can include long-term changes in behavior, personality, communication, and emotion. These can cause them to feel shifts in their relationships with friends, family, and colleagues, such as becoming more dependent on some or feeling left behind by others. As relationships change and/or dissolve, survivors of TBI may feel distanced from those around them, and more reluctant to form new relationships while already grappling with symptoms that can make socialization difficult. Under these circumstances, social isolation often begins to set in.
This lack of social interaction and community integration then gravely obstructs rehabilitation efforts. For one, socially-isolated TBI individuals are presented with fewer opportunities to practice skills in speech processing, verbal communication, and behavioral self-regulation, and without practice, they are unable to improve their execution of such skills (Moore 2012). Social isolation also renders TBI survivors more vulnerable to decreased life satisfaction and poorer quality of life (Cicerone et al. 2004) and is strongly associated with feelings of loneliness, depression, anxiety, and decreased perception of quality of life.
But where traditional rehabilitation programs fall short in supporting the long-term social health of TBI survivors, Harvard Synapse’s social support initiatives help address this gap in the care of TBI patients. Our most popular program is our biweekly virtual peer support group, led by volunteer student coordinators, which gives individuals with TBI from across the nation a welcoming space to connect with others who have had similar experiences, all while remaining safe and pandemic-friendly. Synapse also runs a buddy program that partners individuals who have experienced a TBI with a Harvard College student whom they can meet with individually to form tight and lasting bonds. Events such as these are deeply important for the TBI community as they provide accessible, safe social spaces where all attendees have an understanding of TBI. Spaces like these are difficult to find—in fact, a survey conducted by The Headway Foundation revealed that 70% of people with TBIs feel that those around them do not understand their condition, presenting a major obstacle to connection (The Headway Foundation, 2021). Thus, in addition to offering support groups, Synapse has been working to expand the understanding of TBI within our community by constantly offering educational events and content about brain injury to Harvard undergraduates and beyond. The vision we work towards in these efforts is a world in which the general population understands the effects of TBI and cares deeply for those who sustain them.
Synapse wants every individual with a TBI to know, especially during these particularly isolating times, that there is a support network out there and that we would be happy to be a part of yours. If you would like to contribute to the efforts of Harvard Synapse or believe that you or a loved one would benefit from our services, please feel free to reach out to [email protected].
About the Authors
Madelyn Mauro is a junior at Harvard College concentrating in Human Developmental and Regenerative Biology with a Secondary Field in Classics; Milo Benedict is a senior at Harvard College concentrating in Neuroscience with a Secondary Field in Global Health and Health Policy; Nini Sikharulidze is a freshman at Harvard College intending to concentrate in Human Developmental and Regenerative Biology with a Secondary Field in Global Health and Health Policy; Aylin Tanriverdi is a freshman at Harvard intending to concentrate in Neuroscience.
References
(n.d.) Effects of brain injury. (2021). The Headway Foundation.
Binder, A. S., Lancaster, K., Lengenfelder, J., Chiaravalloti, N. D., & Genova, H. M. (2019). Community integration in traumatic brain injury: The contributing factor of affect recognition deficits. Journal of the International Neuropsychological Society, 25(8), 890–895. https://doi.org/10.1017/S1355617719000559
Cicerone, K. D., Mott, T., Azulay, J., and Friel, J. C. 2004. "Community Integration and Satisfaction with Functioning after Intensive Cognitive Rehabilitation for Traumatic Brain Injury," Archives of Physical Medicine and Rehabilitation (85:6), pp. 943-950.
Douglas, J. 2020. "Loss of Friendship Following Traumatic Brain Injury: A Model Grounded in the Experience of Adults with Severe Injury," Neuropsychological Rehabilitation (30:7), pp. 1277-1302.
Evans, L., and Brewis, C. 2008. "The Efficacy of Community-Based Rehabilitation Programmes for Adults with Tbi," International Journal of Therapy and Rehabilitation (15:10), pp. 446-457.
Headway. 2021. "The Impact of Social Isolation." Retrieved November 18, 2021, from https://tinyurl.com/2nrba2h2
Hill, G. 2021. "How a Chatbot Can Motivate People Recovering from Traumatic Brain Injuries." Retrieved November 18, 2021, from https://tinyurl.com/dd6z579c
Jennekens, N., de Casterle, B. D., and Dobbels, F. 2010. "A Systematic Review of Care Needs of People with Traumatic Brain Injury (Tbi) on a Cognitive, Emotional and Behavioural Level," Journal of Clinical Nursing (19:9-10), pp. 1198-1206.
Moore, M. (2012). Social Work Delivered Intervention for Persons with Mild Traumatic Brain
Injury: Implementation and Evaluation in an Urban, Public, Trauma Center Emergency
Department. University of California, Berkeley.
Morton, M. V., and Wehman, P. 1995. "Psychosocial and Emotional Sequelae of Individuals with Traumatic Brain Injury - a Literature-Review and Recommendations," Brain Injury (9:1), pp. 81-92.
National Academies of Sciences, E., Medicine. 2020. Social Isolation and Loneliness in Older Adults: Opportunities for the Health Care System. Washington, DC: The National Academies Press.
Salas, C. E., Rojas-Líbano, D., Castro, O., Cruces, R., Evans, J., Radovic, D., Arévalo-Romero, C., Torres, J., & Aliaga, Á. (2021). Social isolation after acquired brain injury: Exploring the relationship between network size, functional support, loneliness and mental health. Neuropsychological Rehabilitation, 1–25.
The impact of lockdown on brain injury survivors and their families. (2020). The Headway Foundation
Jodie is not alone. Research by The Headway Foundation, a charity that provides services and support to those affected by TBI, found that “more than 70% of brain injury survivors have seen deterioration in their social life following brain injury” (Headway 2021). This phenomenon is one of the manifestations of social isolation—“the objective state of having few social relationships or infrequent social contact with others” (National Academies of Sciences 2020)—one of the most crushing yet under-addressed potential consequences of traumatic brain injury.
Harvard Synapse is a student organization dedicated to raising awareness of and combating the dramatic detrimental effect of social isolation on survivors of TBI. It is our hope that this article will fulfill our mission by helping students understand why survivors of traumatic brain injury are especially susceptible to social isolation, how social isolation can affect the rehabilitation and wellbeing of individuals who have sustained a TBI, and why the social interventions we offer are promising and impactful.
First, the pervasiveness of social isolation in the community of TBI survivors may be attributed in part to the insufficient support provided to individuals with TBI after acute treatment of their injury. As Dr. Amanda Rabinowitz, director of the Brain Injury Neuropsychology Laboratory at the MossRehab Research Institute, notes, “people get a lot of rehabilitation care in that first six months to a year, but after that, we find that there are financial barriers to seeing a therapist in the office as frequently as we would like” (Hill 2021). As treatment wanes in the months after injury, individuals with TBI often find themselves struggling to manage their symptoms, which can include long-term changes in behavior, personality, communication, and emotion. These can cause them to feel shifts in their relationships with friends, family, and colleagues, such as becoming more dependent on some or feeling left behind by others. As relationships change and/or dissolve, survivors of TBI may feel distanced from those around them, and more reluctant to form new relationships while already grappling with symptoms that can make socialization difficult. Under these circumstances, social isolation often begins to set in.
This lack of social interaction and community integration then gravely obstructs rehabilitation efforts. For one, socially-isolated TBI individuals are presented with fewer opportunities to practice skills in speech processing, verbal communication, and behavioral self-regulation, and without practice, they are unable to improve their execution of such skills (Moore 2012). Social isolation also renders TBI survivors more vulnerable to decreased life satisfaction and poorer quality of life (Cicerone et al. 2004) and is strongly associated with feelings of loneliness, depression, anxiety, and decreased perception of quality of life.
But where traditional rehabilitation programs fall short in supporting the long-term social health of TBI survivors, Harvard Synapse’s social support initiatives help address this gap in the care of TBI patients. Our most popular program is our biweekly virtual peer support group, led by volunteer student coordinators, which gives individuals with TBI from across the nation a welcoming space to connect with others who have had similar experiences, all while remaining safe and pandemic-friendly. Synapse also runs a buddy program that partners individuals who have experienced a TBI with a Harvard College student whom they can meet with individually to form tight and lasting bonds. Events such as these are deeply important for the TBI community as they provide accessible, safe social spaces where all attendees have an understanding of TBI. Spaces like these are difficult to find—in fact, a survey conducted by The Headway Foundation revealed that 70% of people with TBIs feel that those around them do not understand their condition, presenting a major obstacle to connection (The Headway Foundation, 2021). Thus, in addition to offering support groups, Synapse has been working to expand the understanding of TBI within our community by constantly offering educational events and content about brain injury to Harvard undergraduates and beyond. The vision we work towards in these efforts is a world in which the general population understands the effects of TBI and cares deeply for those who sustain them.
Synapse wants every individual with a TBI to know, especially during these particularly isolating times, that there is a support network out there and that we would be happy to be a part of yours. If you would like to contribute to the efforts of Harvard Synapse or believe that you or a loved one would benefit from our services, please feel free to reach out to [email protected].
About the Authors
Madelyn Mauro is a junior at Harvard College concentrating in Human Developmental and Regenerative Biology with a Secondary Field in Classics; Milo Benedict is a senior at Harvard College concentrating in Neuroscience with a Secondary Field in Global Health and Health Policy; Nini Sikharulidze is a freshman at Harvard College intending to concentrate in Human Developmental and Regenerative Biology with a Secondary Field in Global Health and Health Policy; Aylin Tanriverdi is a freshman at Harvard intending to concentrate in Neuroscience.
References
(n.d.) Effects of brain injury. (2021). The Headway Foundation.
Binder, A. S., Lancaster, K., Lengenfelder, J., Chiaravalloti, N. D., & Genova, H. M. (2019). Community integration in traumatic brain injury: The contributing factor of affect recognition deficits. Journal of the International Neuropsychological Society, 25(8), 890–895. https://doi.org/10.1017/S1355617719000559
Cicerone, K. D., Mott, T., Azulay, J., and Friel, J. C. 2004. "Community Integration and Satisfaction with Functioning after Intensive Cognitive Rehabilitation for Traumatic Brain Injury," Archives of Physical Medicine and Rehabilitation (85:6), pp. 943-950.
Douglas, J. 2020. "Loss of Friendship Following Traumatic Brain Injury: A Model Grounded in the Experience of Adults with Severe Injury," Neuropsychological Rehabilitation (30:7), pp. 1277-1302.
Evans, L., and Brewis, C. 2008. "The Efficacy of Community-Based Rehabilitation Programmes for Adults with Tbi," International Journal of Therapy and Rehabilitation (15:10), pp. 446-457.
Headway. 2021. "The Impact of Social Isolation." Retrieved November 18, 2021, from https://tinyurl.com/2nrba2h2
Hill, G. 2021. "How a Chatbot Can Motivate People Recovering from Traumatic Brain Injuries." Retrieved November 18, 2021, from https://tinyurl.com/dd6z579c
Jennekens, N., de Casterle, B. D., and Dobbels, F. 2010. "A Systematic Review of Care Needs of People with Traumatic Brain Injury (Tbi) on a Cognitive, Emotional and Behavioural Level," Journal of Clinical Nursing (19:9-10), pp. 1198-1206.
Moore, M. (2012). Social Work Delivered Intervention for Persons with Mild Traumatic Brain
Injury: Implementation and Evaluation in an Urban, Public, Trauma Center Emergency
Department. University of California, Berkeley.
Morton, M. V., and Wehman, P. 1995. "Psychosocial and Emotional Sequelae of Individuals with Traumatic Brain Injury - a Literature-Review and Recommendations," Brain Injury (9:1), pp. 81-92.
National Academies of Sciences, E., Medicine. 2020. Social Isolation and Loneliness in Older Adults: Opportunities for the Health Care System. Washington, DC: The National Academies Press.
Salas, C. E., Rojas-Líbano, D., Castro, O., Cruces, R., Evans, J., Radovic, D., Arévalo-Romero, C., Torres, J., & Aliaga, Á. (2021). Social isolation after acquired brain injury: Exploring the relationship between network size, functional support, loneliness and mental health. Neuropsychological Rehabilitation, 1–25.
The impact of lockdown on brain injury survivors and their families. (2020). The Headway Foundation
