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A Model System of TBI Peer Support: Importance, Development and Process
The Traumatic Brain Injury Model System of Care at Santa Clara Valley Medical Center in San Jose, California is providing a unique new peer support service for individuals with a brain injury and their families, based on the investigated needs of the community of individuals with a traumatic brain injury (TBI) and their families.
Twenty volunteer TBI Peer Supporters and one Program Coordinator at Santa Clara Valley Medical Center provide structured peer support visits in teams of two, three nights each week on the rehab unit. Many of the Peer Supporters have experienced a TBI themselves, a few are family members of a person with a TBI, and one is a professional with experience in neurorehabilitation. The Program Coordinator is a family member with professional experience in the area of neurorehabilitation.
Importance of Peer Support
The ideas expressed below are just a few examples of the perceived importance and benefits of the services they provide.
The family and patient are not prepared for this traumatic event and are often afraid, confused, angry, and sometimes still in shock when a Peer Supporter visits with them. During the visit, the family and patient will become more aware of the many issues concerning TBI. They will listen to and be with people who have had a TBI and survived. Often times a person with a TBI will experience social isolation and depression. During a visit with a Peer Supporter, the patient and family may feel that they are not alone. They may become educated on the subject of TBI, understand what a TBI means and where they can obtain resources after they are discharged home.
The peer support relationship is meaningful for both parties. The Peer Supporters understand that they are useful and important because they have smoothed the transition by providing a resource, or "just listened" to a person in need. By supporting one another, the Peer Supporters can obtain a sense of altruism which can heighten self esteem and provide an opportunity to feel a sense of purpose.
A patient comments on her experiences speaking with a Peer Supporter: "I decided to talk to a Peer Supporter for some encouragement and mutual understanding. "
Family members comment on their experience speaking with a Peer Supporter: "They (Peer Supporters) were easy to talk to. They (Peer Supporters) provided me with new ideas to cope with the setbacks."
Peer Supporters comment on their experience with the program: "I wanted to thank you for allowing me to heal my wounds from the past by helping others." "I do not think you knew how much you have done to make my life whole again - a journey impossible to measure."
The relationship between the Peer Supporters themselves is important. After an injury, a person may loose a job, a family, friends, or momentum in life. Being a part of this group, Peer Supporters feel like, and are, significant contributors in the community once again. The group cohesiveness helps them to remember where they came from and, in turn, they are more aware and able to set goals and improve their quality of life. Peer Supporters connect with each other socially because they have shared a common experience and a new common goal.
The relationship between the Program Coordinator and the Peer Supporters is also important. The Program Coordinator provides a clear structure to help problem solve scheduling issues and other potential difficulties. Through annual training seminars and ongoing informal training, the Program Coordinator helps to keep the Peer Supporter reminded of the purpose of their activities. The Peer Supporter and Program Coordinator can assist each other by providing meaningful feedback to each other to benefit the program.
Our unique Peer Support Program at Santa Clara Valley Medical Center is built on the ideas above. The peer support idea can be implemented in other communities for people with brain injuries and their families. As Winston Churchill said, "We make a living by what we get, but we make a life by what we give." This program is based on the premise that we can all make a difference in each others lives by giving, in whatever way we can, to help each other.
The Development of a Successful TBI Peer Support Program
1. Assess Needs: We assessed the true need of our community. We sent a questionnaire and contacted facilities in our area to establish a clear picture of the type of support we needed. We found that peer support was the right answer for our community.
2. Obtain Interest: We began with a group of interested people. We recruited members to the group by attending support groups and announcing our idea. We asked professionals with experience in TBI to get involved. We also recruited members with experience in proposal writing. We appointed a Program Coordinator for the group who has good organization skills; a genuine concern for people; a connection to either the hospital, the community, or both; and significant experience in neurorehabilitation.
3. Mission Statement: We created and clearly defined our goals and objectives as a group. We summarized the activities concisely so professionals, program participants and community members could easily understand them.
4. Program Structure: We wrote a clear structure for the program. We established a time line with expectations of the group members. The Program Coordinator became responsible for the delegation of tasks and overseeing the task completion.
5. Obtain Funding: There are many ways to fund a program; individuals, foundations, private corporations, and public or government funds. As our program developed, we found that we needed funds to provide materials for the manuals, etc. As the funding needs became greater, the source became larger. This program has a part-time coordinator, yearly training, monthly meetings, daily phone calls, and other materials including program literature. The funding is provided entirely by the TBI Model System Grant*.
6. Training: We provided professional trainers who covered important issues, such as; grief, active listening, communication, confidentiality, hospital procedures, and basic brain injury education. Training is an ongoing process and is best designed to be flexible to meet the ever changing needs of the Peer Supporters and the rehab program.
7. Establish Group Identity: We hold meetings and social engagements, obtain commitments from the volunteers with yearly contracts, provide monthly schedules, and create an area to work in the hospital. T-shirts, name badges, manuals, and business cards create our visual identity. We also provide monthly reports to the directors and rehab department to create a professional identity.
8. Generate Awareness: The Peer Supporters can chose to volunteer for events each year to showcase our services, for instance; the X-Mas in the Park which is a display at a local park, Tapestry in Talent which is a fair with community involvement, the Rehabilitation Reunion for patients who have left the hospital, or the California Head Injury Foundation Walk-a-thon. We also speak at conferences, write articles, and communicate on a community level about our services.
The Process of a Successful Peer Support Program
The following is a summary of the basic procedures and important concepts involved in the TBI Peer Support Program at Santa Clara Valley Medical Center.
1. Structure: Provide the Peer Supporters with manuals, procedures, notes, directions, schedules, calendars, information, flyers, updates, summaries, lists, follow-ups, reminders, more reminders, and even more reminders. The structure you provide will ensure minimal misunderstandings.
2. Involvement: Every other month meet with the entire group. Offer social get-togethers so that the Supporters have the opportunity to get to know each other better. A cohesive group is important for the Peer Supporters to receive emotional support from each other.
3. Feedback: Make sure each and every one of the Peer Supporters knows that he/she is an integral part of the program and it would not be the same without them. Each Peer Supporter has his/her own special way of supporting. Acknowledge them frequently and differently for their contributions.
4. Opportunity: Keep the Peer Supporters interested by letting them come up with different ideas for the program. Provide updates on the expansion of the group as it progresses.
5. Education: Refresh the Peer Supporters with handouts and training materials frequently. Put information in a common box for the Peer Supporters to review and/or take home. Send information in the mail in the form of a newsletter on a regular basis.
6. Support: The Peer Supporters should know that support is available to them at any time. If they are having a problem or just need someone to talk to about the visits, they should know whom they can call for support. The phone number should be easily accessible in case of an emergency.
7. Ownership: Strive to create a feeling of ownership. Ask the Peer Supporters to give updates or report information to the group at the meetings. This will encourage the Peer Supporters to take personal responsibility. Provide documentation forms for the Peer Supporters to utilize after each visit. The Peer Supporters become accountable when they document their visits. Encourage them to have their own style of supporting and reinforce their differences.
*The Traumatic Brain Injury Model System of Care is funded by the National Institute on Disability and Rehabilitation Research, U.S. Department of Education.
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