BUILDING TECHNOLOGY BRIDGES FOR BRAIN INJURY SUPPORT GROUPS.

Initially, each time her computer screen went blank, Mary cried, "Oh no, I broke it!" She asked repeatedly, "Do you really think someone like me can learn to use a computer by myself?" Mary's lack of confidence stemmed from her brain injury and the changes it brought to her life. After her car accident, she could no longer work or drive. She spent most days watching television, sleeping, or waiting for someone to call her. She missed interacting with people and, most of all, missed feeling useful and needed. With encouragement from her case manager, Mary agreed to participate in a grant project that included training on computer and Internet skills. After several months of training sessions, Mary's confidence and skills grew. She now serves as a co-leader of a weekly computer group of brain injury survivors. Today, this group independently figures out how to handle a computer screen when it goes blank or flashes ominous phrases such as, "Illegal," or "Fatal error!" Computer technology offers new possibilities for brain injury survivors to increase self-confidence, enhance community participation, and engage in meaningful activity.

Services and Supports for Persons with Brain Injury (SSPBI) is a three year grant project awarded to the Department of Recreation and Leisure Studies at the University of North Carolina at Chapel Hill by the US Department of Education, Rehabilitation Services Administration. The grant components are individual therapeutic recreation services, training for community recreation providers, and technical assistance to brain injury support groups. The goals of these services are to:

* Decrease the social isolation experienced by survivors of brain injury,

* Strengthen skills that contribute to successful community life,

* Enable peer support groups to use computer technology to meet social and educational needs of members, and

* Improve community responsiveness to individuals with brain injury.

Traumatic Brain Injuries 

According to a 1999 Center for Disease Control and Prevention report, an estimated 5.3 million Americans currently live with disabilities resulting from traumatic brain injuries. A traumatic brain injury (TBI) is a significant blow to the head caused by external forces such as a fall, assault, vehicle, industrial, or sports related accident. After surviving a TBI, the individual may experience increased fatigue, spatial disorientation, mood swings, speech and hearing difficulties, changes in motor skills, struggles with executive brain functions (e.g. planning, organizing), and a decrease in memory skills (NC TBI Comprehensive Service Plan, 1995).

Traumatic brain injuries occur without warning so survivors and their families are rarely prepared to deal with the medical emergency, long term rehabilitation, financial consequences, and stress of re-establishing one's life (Brooks, 1984). Survivors and family members report that decreased social contact, depression, and loneliness are often the greatest challenges to successful rehabilitation and community reentry (Lezak, 1998). The socially isolating effects of a brain injury are often more exaggerated for individuals living in rural communities where there is less likelihood one can find an array of accessible resources.

Support Groups

Support groups can play a significant role for brain injury survivors when they return to their communities. Members report that they benefit from meeting and interacting with others who understand their unique situation: "Only other survivors really know what it is like to live with a brain injury." Support groups vary almost as much as their individual members, but are designed to meet an array of members' needs. Some support groups focus on emotional support, some provide educational information, and others emphasize advocacy and public awareness. While support groups serve critical functions, it is unlikely that they can meet all the social and recreational needs of members. This project is committed to building community capacity by strengthening the capabilities and resources of support groups and thus promoting its sustainability

Persons with brain injuries may be cautious and reluctant to participate in unfamiliar programs and services. They may not view themselves as capable learners or potential advocates. Participants stated that they were willing to participate in this project opportunity primarily because someone they trusted recommended they "give it a try." A peer counselor from the state's Brain Injury Association and a case manager serving persons with brain injury served as the vital gatekeepers to established support groups. Before initiating the computer training programs, project staff met with these key individuals and gained their interest, support, and enthusiasm. This project targeted brain injury support groups in three regions. Each group was provided with a lap top computer and technical assistance on computer skills and recreation planning.

Focus groups conducted with adult survivors and family members in conjunction with this project, adult survivors and family members reported significant changes in their relationships, daily routines, and leisure experiences which occurred after their brain injury was sustained (Dept. of Recreation and Leisure Studies, UNCCH, 1996). While many survivors expressed appreciation for the support they receive from their "specialized" brain injury support groups, many indicated that they preferred not to recreate solely in large groups comprised only of persons with disabilities. Typical comments included: "I feel like I am in a fishbowl when we all go out to a restaurant," or "I don't just want to dance with people with handicaps." Instead, they stated that they enjoyed sharing time with family members, longed for intimate relationships, and prefered interacting with persons who share similar recreation interests (e.g. golf, computers, reading, soccer, and dancing). This grant project has encouraged the development of small activity groups that could meet outside of monthly support group meetings and emphasized participation in community events designed for persons with and without disabilities. Similarly, Internet training sessions taught participants how to search for resources and opportunities that matched their interests rather than just their "disability label." The goal was to build community capacity by strengthening the resources and capabilities of support groups and to provide group members with the resources to explore options for determining the structure and content of their own recreation routines.

Technology Barriers

Persons with brain injuries may experience a variety of barriers relative to computer and Internet access and use. Memory impairments, especially short-term deficits, make it more difficult to remember how to use new equipment such as a computer mouse, where to find a certain web resource, and recall how to navigate a specific web site. When using a computer, some may also struggle with the fine motor skills required to use a traditional computer mouse or with the visual acuity to read standard computer screens. Internet surfing can be challenging as it requires attention and concentration skills. For instance, they may struggle with the necessary attention and concentration skills that are required for Internet surfing. The latest graphic features of web pages such as animated images, multiple frames, and flashing banner ads, may easily distract individuals with brain injuries or other cognitive limitations. They often access the Internet on less expensive computers at home or at public computing centers that typically have slower modems, sluggish Internet servers, and thus, longer loading times. Individuals with attention deficits and varying concentration skills may demonstrate even less patience than the typical Internet surfer when waiting for web pages to load.

Making Things Happen

Peer leaders of a local support group in a town in central North Carolina met twice a month for approximately eight months with a certified therapeutic recreation specialist (CTRS). The participants, all brain injury survivors, named themselves, "The Rec Heads." Training topics focused on:

* Recreation and it's contribution to health and recovery,

* Techniques for leading a group discussion about recreation,

* Steps for surveying group members' recreation interests,

* Methods for obtaining information about community resources,

* Ideas for planning recreation for small groups (2-6 persons), and

* Routines for developing a monthly calendar of recreation options.

The Rec Heads learned about assistive technology, availability of equipment loan programs, and computer resources. They mastered basic computer skills and learned to use the Internet for locating a variety of community resources.

In another rural community in northeastern North Carolina, the same project piloted Internet classes for members of the local brain injury support group, which were conducted on a different schedule and with different learning topics. Meeting weekly for four months, the CTRS taught class participants steps for:

* Using computer equipment such as a computer mouse,

* Sending email and posting opinions on Internet discussion boards,

* Surfing safely on the Internet,

* Playing thinking games online,

* Using search engines to find resources, and

* Designing simple web pages.

The training topics selected by the support group reflect the needs, interests, and capabilities of its members and community. The role of the CTRS was to honor these strengths and differences and to provide the means for the group to meet its learning goals.

Outcomes and Implications

Participants of this project reported an increase in self-confidence that extended beyond the computer training sessions and covered topics. For example, they began making phone calls about employment and where members could go to find support for vocational rehabilitation. Members also used the discussion boards to offer information and suggestions to peers about how to access specific community recreation opportunities. The Rec Heads continue to create a monthly calendar of weekly recreation options and link with the local parks and recreation department. They independently contact and arrange for small groups of friends to meet and go bowling, watch a favorite video, or to attend their community's yearly theatre festival. The second support group has initiated and maintained a computer group which meets weekly to update the group's web page and post responses to an Internet discussion board marketed to other survivors of brain injury. They have encouraged other survivors to become active in their home communities and assumed a stronger leadership role within the monthly support group meetings.

It is critical that therapeutic recreation services address the challenges faced by individuals with disabilities after intensive facility- based rehabilitation ends. Services must celebrate each person's abilities, interests, strengths, and needs. Therapeutic recreation is well suited to this mission as it embraces a definition of health that includes not only the absence of illness, but the enhancement of physical, cognitive, affective, and social development (ATRA, 1995) as well as promoting independence and quality of life (NTRS, 2000). CTRSs must serve people where they live (Bullock and Howe, 1991), utilize outreach and advocacy, provide opportunities for skill application and mastery (Bullock and Luken, 1994), and promote universal design and access. We know that in these times of change it is necessary to examine where and how we practice and provide services that are cost-effective and meet the needs and desires of consumers and families (Nerney & Shumay, 1996).

Useful resources developed through this project:

The Brain Spot

http://www.unc.edu/depts/recreate/spot/ (change domain name!!)

The Brain Spot, a new web site, is designed to be accessible and fun for Internet beginners who have varying abilities for processing written and visual content. The Brain Spot uses a consistent design and layout. Basic icons are used to simplify navigation. Choices and content are downsized on each page to prevent users from becoming overwhelmed. This site meets accessibility guidelines recommended by the World Wide Web Consortium's (W3C) Web Accessibility Initiative. The site includes a mouse tutorial, a simple discussion board, suggestions for utilizing community recreation resources, and a selection of online games that enhance cognitive skills.

Universal Web Design guidelines

These recommendations, applicable to all web sites, provide an easy reference for recreation professionals to discuss accessible web design with their web designers. This tool can be downloaded at: http://www.unc.edu/depts/recreate/crds/

References

American Therapeutic Recreation Association (1995). Mission Statement

Brooks, N. (Ed.) (1984) Closed head injury: psychological, social, and family consequences. Oxford University Press, New York.

Bullock, C.C. & Howe, C.Z. (1991). A model therapeutic recreation program for the reintegration of persons with disabilities into the community. Therapeutic Recreation Journal, 25(1), 7-17.

Bullock, C.C. & Luken, K.J. (1994). Reintergration Through Recreation: A community-based rehabilitation model. In D.M. Compton & Iso-Ahola (Eds). Leisure and Mental Health: Volume 1, Park City, UT: Family Resources.

Lezak, M.D. (1988). Brain damage is a family affair. Journal of Clinical and Experimental Neuropsychology, 10, 111-123.

National Therapeutic Recreation Society (2000). Definition of Therapeutic Recreation.

North Carolina Traumatic Brain Injury Comprehensive Service Plan (1995).

Betsey Zook and Karen Luken are the authors of the article "Building Technology Bridges for Brain Injury Support Groups". Zook earned her Master's degree in Recreation with an emphasis in Therapeutic Recreation from the University of Northern Colorado. A certified therapeutic recreation specialist, she is currently working at the University of North Carolina at Chapel Hill implementing a grant titled, "Services and Supports for Persons with Brain Injury." She is an advocate for improved technology access for persons with disabilities, serving on several committees and non-profit boards addressing these needs. Luken earned her Master's degree from UNCCH in Recreation Administration with a concentration in therapeutic recreation. She is the associate director of the Center for Recreation and Disability Studies in the Department of Recreation and Leisure Studies at UNCCH and is responsible for an array of grant and contract projects that focus on recreation's contribution to quality of life, health and wellness, and social support. She is active in a variety of advocacy and professional organizations.