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Benefits of a Support Group

Good Coffee, Good Conversation, Good Idea

Kim Watkins, M.Ed.
KristyAnn Pfister

Individuals with acquired brain injury report that their primary social concern is isolation and loss of social contact. This creates a renewed dependence of the survivor on his/her family.  Morton, M.V., & Wehman, P. (1995). Psychosocial and emotional sequelae of individuals with traumatic brain injury: A literature review and recommendations. Brain Injury, 9(1), 81-92.

I don’t know why coffee seems to have an ongoing presence when speaking of rehabilitation. But it does. Maybe it’s the smell, the process of making coffee itself, or the energy that one needs to participate or work in rehabilitation. Like coffee that may be creamed, sugared, chocolated, latted, or in some cases thickened, there are multiple settings in which one may participate in rehabilitation: acute, post-acute, comprehensive day treatment, respite, in-home support, and whatever they are calling whatever new service is being offered these days. In all of these settings coffee is a main player–a star. It seems coffee is always nearby, as prevalent as journals, memory books, wheeled walkers and gait belts. Even the act of making coffee (or problems doing so) are mentioned as a symptom of brain injury: “Inability to plan a sequence of complex movements needed to complete multi-stepped tasks, such as making coffee” (www.braininjury.com, 2003).

Another ever-present component of rehabilitation and recovery is recreation. Gone, hopefully forever, are the days of TV discharges—those discharges where one departs to a place to live and spends the majority of his or her time sitting in front of a television, whether they like to watch TV or not, whether they have ever watched TV for recreation or not, whether they ever once expressed the inclination to do so or not. The only discharge less acceptable than a TV discharge is a discharge to do nothing. No continuing supports, no support group, no recreational pursuits, and no fun.

Finding a means of meaningful socialization and recreation is especially important for those who no longer participate in traditional rehabilitation and have not returned to employment. “On first returning to the community, people with traumatic brain injury (TBI) may have reduced awareness of their cognitive deficits and can fail or do badly if pressured to return to work, study or household responsibilities too soon” (Khan F., Baguley I., & Cameron I., 2003). Vocational and leisure options such as retraining, reskilling, on-the-job training, supported employment services, modified recreational activities, and social support opportunities are needed.

The fact that people need these services does not mean they are available or accessible. Throughout the course of an individual’s rehabilitation, identified needs often are not met. Often the residual effects of the injury itself (behavioral, cognitive, physical) prevent access to services gravely needed. “Frequently, there are problems accessing rehabilitation services in a timely manner and major financial barriers make access to TBI rehabilitation services difficult for many individuals. These factors and others make it difficult for persons with TBI and their families to obtain the necessary community support and to participate optimally in the rehabilitation process” (Khan F., Baguley I., & Cameron I., 2003).

As brain injury rehabilitation itself grows older, the length of time that persons with injuries receive services grows shorter. This change effects not only the person with the brain injury, but those around him/her offering caregiving services and support. “Presence of cognitive, behavioural and emotional changes was the strongest predictor of anxiety and depression in relatives and of unhealthy family functioning” (Ponsford J., Olver J., Ponsford M. & Nelms R., 2003). Those with injuries and their families become isolated. Many researchers in brain injury agree that services need to be provided to address these issues: “Every attempt should be made to develop models of long-term support and care that alleviate these sources of burden on relatives. Community-based, non-medical services should be components of the extended care and rehabilitation available to persons with TBI. These include but are not necessarily limited to clubhouses for socialization” (www.emedicine.com, 2003).

Where are the services? In the 1990’s the “Clubhouse” model became popular. This was a minimally structured day activity styled plan where those served were offered nominal supervision and guidance most often by licensed professionals. “Clubhouses” were often set up in the day room or in a building adjacent to a larger health care facility. Due to its scantly structured nature, funding for such a service could not be based upon documentation of “progress” as is classically required by most funders. As a result, this system diminished and there, with few exceptions, was not a model to replace it.

Recently, however, day activity programs designed specifically for persons with brain injury have been developed as a way to offer socialization to those who may not readily attain it within the community. A typical day program begins with its own version of the “coffee klatch”—the ever-present coffee. Coffee is brewed by one of the attendees, while other day program members gather. What day of the week it is often determines who is coming. Some join the gang for coffee daily; others stop in occasionally. Some call out greetings to everyone. One less social participant, who has extremely impulsive behaviors, swings by and says hi to his friend in the group, with whom he has discovered a shared interest in classic rock music. This social aspect expands beyond members of the group, to staff members, and to family members/friends who drop in to visit current attendees or to pick up someone.

After coffee, every day may be different, as those who participate in it design the day. It is interesting, as the weather turns colder and the group enters its first winter days, to see what type of activities the day program attendees choose. Perhaps bowling every other week will be replaced by time working on a holiday craft project to donate to a city shelter or safe house. Maybe family style meals will be created for a week. Maybe doing the Cha-Cha Slide indoors will replace walking at the park. For sure, they will find activities interesting enough to occasionally convince even the most skeptical attendee to join, even if it is begrudgingly at first.

For the right person, this social club, with therapeutic activities cleverly woven within, can have tangible, long-lasting positive after-effects. The value is seen when family members stop one another to say hello during evening pick-ups, providing much needed support; when a new day program member writes down the dates another member will be attending, developing a new friendship; when a member assists another to complete a task, enhancing self esteem; when members begin to leave their wheelchairs at home, walking from group to group.

Another venue for socialization was created by Dave Listowski who sustained a brain injury in 1988 and was not able to return to his usual activities right away. “It started when I chaired meetings for the brain injury association. Every time there was a coffee break everyone seemed to like it better than the meetings.” Dave is speaking of how Café Plus, a coffee shop for people with traumatic brain injuries, originated.

Now successfully employed, Dave works to fill the socialization gap often experienced by persons with brain injuries. “I’m trying to give back to the community.” Almost every Saturday for the past seven years Dave has opened his coffeehouse. “I had to take three days off in a row and everyone got confused, so now I get someone to fill in for me if I am sick and especially around the holidays when people need this. Sometimes I call it ‘Cheers without Beers’, because it’s a hangout like Cheers.” Dave says that recreation, card games, movies on the big screen TV and, without fail, coffee and bagels are offered. “People get here however they can, bus, cars, walk in, van rides.”

Café Plus typically serves 10-12 people a week and for special occasions has had up to 75 people in one day. The building is accessible. Available to help with transfers and sometimes rides, Dave has found that, “The more I do for people the less they do.” He uses this observation to help foster independence in Café Plus patrons.

As those attending Café Plus are TBI survivors, many just out of formal rehabilitation, sometimes there are problems with language and behavioral issues. They may have problems with disinhibition and pragmatic issues. Dave commented, “I tell them if this were Denny’s would you act like that? What I am trying to do is make a community of peers, but it is not a democracy, I make the final decisions. The social interactions are just as important as any of the other therapies in that deficits may exist as a result of the TBI and behavior and cognitive therapies may not identify the real-world behavior of social interactions. Cafe Plus, while not a panacea, is a useful place for TBI survivors to re-connect socially and allows TBI survivors, especially those just out of rehab, to have some continuity in their lives.” Persons with brain injuries, their families and friends are working to offer the “coffeehouse model” within their own communities. “I get calls and e-mails all the time about this.”

Dave relates from his experience the way to put together this model of minimal costs:

  • Offer consistent hours and days.
  • Seek donations:
  • The space is donated. Dave appeared before the building’s board, explained to them every- thing he wanted to accomplish with the project.
  • Coffee and bagels are donated.
  • A large screen tv and other games and activities were donated by a local brain injury rehabilitation program.
  • Get the word out. Those served learn about the coffee shop in different ways. The local brain injury association lets folks know. Dave puts out a quarterly newsletter, The Voice, which provides information. “People tell each other and drop in.”
  • Form a working group to aid in the division of work. “If I was to do one from scratch I’d get a little committee together. Doing it on your own makes it so you can never take a break.”
  • Be motivated.

“The whole thing is a labor of love;  it comes from my heart” (Listowski, D. Personal Interview, September 2003).

“Persons with TBI should have access to rehabilitation options through the entire course of recovery, which may last for many years after the injury”(www.emedicine.com, 2003). The “professionals” may agree upon the need for this kind of service, but it’s a good thing there are folks like Dave that exhibit the courage and resolve to actually provide it. Day program or coffeehouse, these venues meet different needs in different ways. They, however, are not enough. Creativity is needed to identify other ways to meet the socialization needs of persons with brain injury. Perhaps you have your own ideas. Please share them—over coffee!

Email: editor@premier-outlook.com

Dave Listowski may be contacted by email at cafeplus@dreamscape.com

Video Resources

THE IMPACT OF BRAIN INJURY ON RELATIONSHIPS: THREE PERSONAL STORIES – Jeffrey S. Kreutzer, Ph.D., Patricia Goodall, Ed.S., Kimberly Jordan, Jay McLaughlin, Rebecca Golda,
and Jane Brittingham

Some say that the best way to learn effective helping strategies is to talk to people who “have been through it.” Four individuals share their personal stories in an interview with Dr. Kreutzer and Ms. Goodall. Kim and her mother, Rebecca, talk about how Kim’s injury changed the course of their lives and the effect it has had on Kim’s relationship with her family and others. Jane candidly discusses the immense struggle she has had adjusting to her husband’s brain injury. Lack of appropriate services for the family and impact on sexuality are two of the topics she addresses. Finally, Jay, a young man who was injured on his bicycle while training for a triathalon, shares the personal tragedy of a broken marriage, unemployment, and depression as a result of his brain injury. The videotape design allows for selection of each individual “story” for the intended audience and can be shown separately. (Each story runs approximately 20 minutes. Total length is 60 minutes.) The National Resource Center for TBI, Virginia Commonwealth University, http://www.neuro.pmr.vcu.edu/material/material.htm

REBUILDING RELATIONSHIPS AFTER TRAUMATIC BRAIN INJURY – Jeffrey S. Kreutzer, Ph.D.
To improve viewers’ ability to rebuild families after injury, this videotape focuses on brain injury related changes that often negatively impact relationships. Major problems stem from medical and financial problems, emotional and behavioral problems (e.g., depression, loss of social skills, emotional lability, lowered self-esteem), and cognitive problems (e.g., changes in short-term memory and problem-solving skills). Individuals who sustain a traumatic brain injury must cope with increased dependence on family and friends, as well as social rejection caused by societal stereotypes of disability. Strategies for fostering social relationships ranging from social skills training programs for individuals with traumatic brain injury to respite for families to public education are discussed. (15 minutes) The National Resource Center for TBI, Virginia Commonwealth University,
http://www.neuro.pmr.vcu.edu/material/material.htm

SURVIVOR TO SURVIVOR
Persons with brain injury eloquently tell their stories. Some were injured many years ago and describe some of the effects of brain injury, including symptoms of fatigue, social isolation and depression. (50 minutes) Brain Injury Association of Minnesota, 1996,
http://www.braininjurymn.org/LibraryResources/Prevention.htm

YOU, ME, AND COMMUNITY – CONNECTING THE PIECES
Persons with brain injury and family members describe coping strategies and reintegrating into the community. This video is close-captioned. (19 minutes) Brain Injury Association of Connecticut, 1994, http://www.braininjurymn.org/LibraryResources/FamilyRelationshipIssueVideos.htm

BUILDING FRIENDSHIPS – WHEN STUDENTS HAVE SPECIAL NEEDS
Judith Voss, Elizabeth Cooley, Ann Glang, Bonnie Todis, & Marilyn Lash
This manual and video present an innovative program for building peer support, decreasing social isolation and developing friendships. It is an approach parents and school staff can use to address the loss of friends that is so common among students with brain injuries. Using a friendship facilitator, a step by step description takes the reader through how to recruit participants, involve families and peers, run effective meetings, and troubleshoot potential problems. Lash and Associates Publishing/Training, Inc, 1999,
http://www.lapublishing.com/BooksOnBrainInjury.htm

Premier Outlook, Winter 200, Volume 4, Issue 1


 
 
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