Activity-Based Support
Research by Sarah Shadi
This research provides essential insights into programs offered, key components needed for their success, and critical steps required to launch this project. Beyond advancing adaptive therapeutic programs, this project will also help provide the tools to assess the impact of activity-based support on social isolation.
Program benefits:
Foster social connections
Enhance Neurorehabilitation
Navigate the impact of trauma
Embrace our new normal
Improve overall quality of life
As a brain injury survivor, I witnessed both myself and other survivors grappling with profound social isolation. The cognitive and physical challenges I faced after my brain injury, compounded by fears of public seizures and difficulties with word retrieval in conversation, led me to withdraw more over time. Connecting with other survivors through support groups revealed our shared experiences and struggles with isolation. This ignited my passion to study and address social isolation in the brain injury population.
When I entered my PhD program, I focused my study on neurorehabilitation and my research on social isolation in brain injury survivors. I found that most research and treatment for survivors focuses on the cognitive, physical, and psychosocial consequences of an injury. However, there is less research and treatments for the emotional consequences, specifically feelings of social isolation in brain injury survivors.
Hoofien, D., Gilboa, A., Vakil, E. & Donovick, P.J. (2000) wanted to assess the long-standing impact a brain injury can have on cognitive and psychosocial functioning in survivors. The findings of this study highlight the need for long-term support for TBI patients and their families to maintain a reasonable quality of life. The study was aimed to assess the long-term mental and psychosocial impacts of severe traumatic brain injury (TBI). Seventy-six individuals with severe TBI were evaluated approximately 14 years post-injury using standardized scales, neuropsychological tests, and family evaluations. Six domains were assessed: psychiatric symptoms, cognitive abilities, vocational status, family integration, social functioning, and daily independence. Results show that TBI had significant lasting effects on psychiatric health, family, and social interactions, with relatively high levels of depression, psychomotor slowness, loneliness, and family burden. The findings highlight the need for long-term support for TBI patients and their families to maintain a reasonable quality of life.
Research indicates that psychiatric health is a long-standing consequence of a brain injury, and yet assessments and treatment for this are lacking. Emotional understanding is crucial for social interactions and can suffer after a brain injury. This may lead to depression, emotional instability, and social isolation. Given the lack of existing research and tools to measure social isolation in survivors, I recognized the need for a tailored approach. For my master’s thesis, I developed and validated a measure to assess feelings of social isolation, uniquely designed for the brain injury population.
After validating my measure for feelings of social isolation in brain injury survivors, I wanted to answer an important question for my dissertation: Are feelings of social isolation a significant consequence of brain injury? My research found that a significant number of brain injury survivors experienced an increase in feelings of social isolation over time.
After graduation, I started working on a research-based therapeutic program that combats social isolation and helps stimulate recovery by rebuilding social connection and community engagement. My first step was to gather all the relevant research and studies, then identify and deploy the most effective strategy for fostering social connection and civic engagement that will support a better quality of life.
Hibbard, M.R., Cantor, J., Charatz, H., Rosenthal, R., Asbman, T., Gundersen, N., Ireland-Knight, L., Gordon, W., Avner, J., & Gartner, A. (2002) evaluated a community-based peer support program’s impact on individuals with traumatic brain injury (TBI) and their family members. Twenty participants (11 with TBI, 9 family members) provided feedback through structured interviews and qualitative assessments. Results showed that participants experienced improvements in TBI knowledge, quality of life, mood, depression, and coping skills due to peer support. However, the program had limited effects on social support from family, friends, and the community. Impacts on happiness, anger, anxiety, professional communication, and life control were varied. Qualitative findings highlighted both benefits of the program and areas for improvement. The study concluded that peer support shows promise in helping individuals and families cope after TBI, though further development is needed.
The study conducted by Hibbard, et al. (2002) demonstrated the utility and benefit of peer support and mentoring for brain injury survivors, a finding that resonated deeply with me. My father, who had sustained a brain injury 20 years before my own, became my mentor, offering the guidance and support I needed to process the physical, mental, and emotional challenges I faced. This mentoring relationship not only reassured me that I wasn’t alone in my struggles but also demonstrated the mutual benefits of support, as helping others brings purpose and healing to both the mentee and mentor.
Lawrence, K.A., Matthieu, M.M., & Robertson-Blackmore, E. (2017) examined the effects of a 6-month community-based civic service program on health, psychological, and social outcomes in veterans, including those with traumatic brain injury (TBI). A cohort of post-9/11 veterans (67 with TBI, 273 without) participated in a 20-hour-per-week volunteer program. Results showed significant improvements in overall health, reduced PTSD symptoms, increased self-efficacy, decreased isolation and loneliness, and greater perceived social support for veterans with TBI. Reduced social isolation was identified as a key factor in these psychological and social improvements. Notably, TBI history did not limit the benefits gained from the program, suggesting that civic service can support wellness and reduce isolation in veterans with TBI. The findings indicate that volunteering may help prevent social isolation and promote perceived support in this population.
The study by Lawrence, et al. (2017) demonstrated the potential positive impact of volunteering and civic engagement can have on brain injury survivors. Additionally, the peer mentorship program highlighted in the Hibbard, et al. (2002) study suggests that such programs can bring benefits not only to the brain injury survivors but also to the mentors who volunteer their support.
Brown, M., Gordon, W.A., & Spielman, L. (2003) compared social–recreational activity levels in individuals with traumatic brain injury (TBI) and those with no disability (ND). It involved between- and within-group comparisons, with 279 participants with TBI and 224 without disability, recruited from community sources. Using a social–recreational activity measure derived from community integration scales, the study found that the ND group was more active socially and recreationally than the TBI group. In the TBI group, greater activity was linked to being single, higher income, fewer depressive symptoms, more vocational hours, and longer time since injury. The findings suggest that addressing depression, fatigue, and vocational engagement could help individuals with TBI achieve fuller social–recreational lives.
While brain injury support groups provide valuable help, sometimes a more is needed. My father often shares the story of his life-changing hit-and-run bike accident in 1977, where he was thrown over 50 feet and landed on his head. Though he received excellent medical care for the resulting leg amputation, his brain injury went untreated.
In 1980, he joined a group of amputees in Atlanta who formed an adaptive sports group to play tennis—a surprising yet transformative choice. This combination of peer support and adaptive sports not only helped him overcome social isolation but also gave him a renewed sense of connection and purpose.
Since then, adaptive sports have been a significant part of his life. He’s dedicated much time to volunteering and serving on the board of an adaptive sports organization. I grew up attending meets and events alongside him, experiences that opened my eyes to the power of adaptive therapeutic activities and instilled in me a deep appreciation for civic engagement from an early age.
Perna, R.B., Bubier, J., Oken, M., Snyder, R., & Rousselle, A. (2004) wanted to assess whether group-based therapies can effectively address symptoms related to brain injury and are cost-efficient for TBI survivors working toward re-employment (Parente & Stapleton, 1999). However, research on the effectiveness of group treatment for TBI survivors is limited, largely due to challenges in random patient assignment. Further research is needed to examine broad outcomes relevant to multidisciplinary post-acute rehabilitation (Evans & Ruff, 1992). Groups may address different needs at various treatment stages and are beneficial because they engage participants in activities of high interest, which boosts motivation and participation—key factors for program success. The structure of group therapies may also help participants transfer skills to real-world situations, making group-based treatments potentially valuable, though more evidence is needed to confirm their effectiveness.
In essence, this research-driven approach represents more than a therapeutic model; it is a bridge to a better quality of life. By using evidence-based strategies and assessment tools, this project paves the way for impactful, sustainable programs that address social isolation as a core barrier to recovery. By fostering social bonds, we can break the isolation cycle and create an environment where every survivor feels supported, connected, and engaged.
Sarah Shadi
Reference:
Brown, M., Gordon, W.A., & Spielman, L. (2003). Participation in social and recreational activity in the community by individuals with traumatic brain injury. Rehabilitation Psychology, Vol. 48, No. 4, 266-274.
Hibbard, M.R., Cantor, J., Charatz, H., Rosenthal, R., Asbman, T., Gundersen, N., Ireland-Knight, L., Gordon, W., Avner, J., & Gartner, A. (2002). Peer support in the community: Initial findings of a mentoring program for individuals with traumatic brain injury and their families. J Head Trauma Rehabil, 17(2):112-131.
Hoofien, D., Gilboa, A., Vakil, E. & Donovick, P.J. (2000). Traumatic brain injury (TBI) 10± 20 years later: A comprehensive outcome study of psychiatric symptomatology, cognitive abilities and psychosocial functioning. BRAIN INJURY, Vol. 15, No. 3, 189-209.
Lawrence, K.A., Matthieu, M.M., & Robertson-Blackmore, E. (2017). Completion of a veteran-focused civic service program improves health and psychosocial outcomes in Iraq and Afghanistan Veterans with a history of traumatic brain injury. Military Medicine, 182, 7/8:e1763.
Perna, R.B., Bubier, J., Oken, M., Snyder, R., & Rousselle, A. (2004). Brain injury rehabilitation: Activity based and thematic group treatment. The Journal of Cognitive Rehabilitation, Fall 2004, 20-24.
Shadi, S. & Tiet, Q. (2018). Feelings of social isolation in people with brain injuries. Poster presented at the American Psychological Association Annual Convention in San Francisco, CA.
Shadi, S. & Tiet, Q. (2022). Feelings of social isolation and introverted behaviors in brain injury survivors. Poster presented at the TBI Summit Conference in Columbus, Ohio.