The Power of Community for Post-TBI Life Support groups can be a lifesaver for people with communication difficulties and their families. These guidelines can help you start one. Make It Work
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Make It Work  |   November 01, 2017
The Power of Community for Post-TBI Life
Author Notes
  • Carrie Childers, PhD, CCC-SLP, is an assistant professor in the Department of Communication Disorders at Marshall University in Huntington, West Virginia, where her research focuses on community supports for people with traumatic brain injury. She is an affiliate of ASHA Special Interest Groups 1, Language Learning and Education; and 2, Neurogenic Communication Disorders. childersca@marshall.edu
    Carrie Childers, PhD, CCC-SLP, is an assistant professor in the Department of Communication Disorders at Marshall University in Huntington, West Virginia, where her research focuses on community supports for people with traumatic brain injury. She is an affiliate of ASHA Special Interest Groups 1, Language Learning and Education; and 2, Neurogenic Communication Disorders. childersca@marshall.edu×
  • Kelly Rutherford, MS, CCC-SLP, is an assistant professor in the Department of Communication Disorders at Marshall University in Huntington, West Virginia. Her interests include aphasia, dysphagia and interdisciplinary management of patient care. She is an affiliate of ASHA Special Interest Groups 2, Neurogenic Communication Disorders; and 10, Issues in Higher Education. davis139@marshall.edu
    Kelly Rutherford, MS, CCC-SLP, is an assistant professor in the Department of Communication Disorders at Marshall University in Huntington, West Virginia. Her interests include aphasia, dysphagia and interdisciplinary management of patient care. She is an affiliate of ASHA Special Interest Groups 2, Neurogenic Communication Disorders; and 10, Issues in Higher Education. davis139@marshall.edu×
Article Information
Attention, Memory & Executive Functions / Traumatic Brain Injury / Make It Work
Make It Work   |   November 01, 2017
The Power of Community for Post-TBI Life
The ASHA Leader, November 2017, Vol. 22, 30-32. doi:10.1044/leader.MIW.22112017.30
The ASHA Leader, November 2017, Vol. 22, 30-32. doi:10.1044/leader.MIW.22112017.30
As 19-year-old Michael and his family said goodbye, we told them how proud we were of Michael’s remarkable progress in his four weeks of inpatient rehabilitation following his traumatic brain injury from a car accident. But despite his improved speech and cognitive skills—and his excitement about going home—we had some nagging concerns.
Michael was scheduled to start outpatient speech and cognitive treatment soon, but how long would he and his family be able to make the long trip from their rural West Virginia home to the outpatient therapy center? Who would help his family deal with the challenges of the 24/7 care Michael needed for his cognitive and physical impairments? Where would Michael and his family find people who could understand their difficulties and provide support?
Undoubtedly, the risk of social isolation would be real for Michael and his family—and many people with brain injuries share their story. Patients and families frequently struggle to adjust to their new reality when they return home after an illness or accident. Community support groups—which provide a safety net of support, information and a safe space to interact with others who have had similar experiences—are one resource that can help patients and families through this transition.
And who could be better to facilitate such groups than speech-language pathologists—the professionals with deep knowledge about communication and a lifelong focus on maximizing quality of life?
If you have considered starting up such a group—but are overwhelmed by the scope of the project—take heart, you are in good company. When we started a brain injury group for survivors and their families at Marshall University in Huntington, West Virginia, we weren’t sure we could pull it off. But in the nearly three years since we began our traumatic brain injury (TBI) support group for patients and their family members, we have developed some useful tips that may make it easier for others who want to design and facilitate a support group—not just for TBI, but for patients and families coping with just about any diagnosis.

Patients and families frequently struggle to adjust to their new reality when they return home after an illness or accident.

Find a co-pilot
The right co-leader is essential. Our common interest in the cognitive-linguistic effects of brain injury led us to develop a group, but it has been our positive working relationship that has made the group successful over time. We share some responsibilities—getting snacks and co-facilitating meetings, for example—and divide others, such as making handouts and maintaining the group’s Facebook page. We are also willing to be flexible if one of us needs to miss a meeting or is too busy to plan.
When you look for someone to team up with, make sure to choose someone who shares your vision and is willing to work as part of a team for the long haul.
Find community partners
You don’t necessarily need to create your group from scratch. Outside partnerships, as we found, can be a great way to get your group up and running. As our planning began to take shape, we discovered that the West Virginia University Center for Excellence in Disabilities was promoting the statewide development of community support groups for TBI survivors and their caregivers. The center provided invaluable ideas about group structure, resources on brain injury and support services, and contacts to help build the group. In fact, the local resource coordinator still attends many of our meetings.
So, before you start planning, check for state or national organizations that might have resources to offer.

You don’t necessarily need to create your group from scratch. Outside partnerships can be a great way to get your group up and running.

Be flexible
We are over-planners. For example, our first meetings were broken down into timed segments (10 minutes for introductions, 10 minutes for a presentation and so on). But we quickly discovered that this system was too restrictive and that letting the group choose the flow of the meetings strengthened the rapport between the members and us. Flexibility also provided an excellent way for members to share their wisdom and support with one another. Now, we follow a loose schedule—snacks and catching up with one another, a presentation or discussion about the evening’s topic, and a wrap-up that includes suggestions for future topics.
We’ve scheduled meetings around topics such as setting goals, pain management, coping mechanisms, exercise, volunteerism and more. But no matter what we have planned, we always include a sharing time and encourage members to actively guide the meeting in a way that is most helpful to them.
The group belongs to the members, so if that means you toss out a meeting plan or two, so be it.
Listen … and listen some more
We firmly believe in facilitating person-centered outcomes for group members. So, during the planning process we knew we needed to make sure we were meeting their needs. We encourage group members to share comments or concerns at any time, and we also ask them to complete an anonymous survey several times a year.
We quickly learned, for example, that TBI survivors and their family members periodically wanted time apart to talk about issues and concerns that were specific to them. As a result, our current location has additional space that allows us to meet separately.
Our survey includes questions about potential topics and speakers, satisfaction with aspects of meetings (location, confidentiality and structure, for example), willingness to facilitate meetings, and general comments and suggestions. We find that maintaining open lines of communication with our members keeps us accountable to them and has helped them take ownership of the group.
Being an active and responsive listener—in whatever way you choose to solicit feedback—will help to establish trust and further group members’ satisfaction.
Dive in
After a few months of planning, preparation and trying to anticipate every possible scenario, there was nothing left to do but begin. We knew we would make mistakes and that we would learn along the way. But we made up our mind to embrace the adventure and three years later, we’re still going strong.
We discharge individuals like Michael every day, knowing they may return to areas where resources are scarce. Michael was our patient before we started the group, and because he transitioned to outpatient treatment in a different city, we lost track of him. We hope we have increased access to resources for TBI survivors and their families through support groups like ours.
We know that through our group, individuals who might not otherwise have a support system have developed enriching friendships, better understand their injury and themselves, and have access to resources that promote life participation. Final advice? Just take a deep breath, reach out to your community and make a difference.
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FROM THIS ISSUE
November 2017
Volume 22, Issue 11