TBI Consumer Report: Peer Mentoring

Mount Sinai Medical Center

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Multimedia

• An interview with Sarah Wade and retired Army Sergeant Edward "Ted" Wade. Following the attacks of September 11, Ted was called on to serve first in Afghanistan and later in Iraq. On February 14, 2004, his humvee was hit by an Improvised Explosive Device (IED) on a mission in Al Mahmudiyah. He sustained a severe TBI, suffered a transhumeral traumatic amputation, multiple fractured bones, soft tissue shrapnel injuries, and complications due to acute anemia, hypergycemia, and infections. Though SGT Wade remained in a coma for more two months, and withdrawal of life support was discussed, he made a remarkable recovery. Transcript of this video. BrainLine Talks with Sarah and Ted Wade About Their Personal Story

Issue 7: Peer Mentoring

The essence of peer mentoring is that individuals who are "veterans" of an experience such as TBI help others new to the experience to adjust. Peer mentoring programs have been developed for individuals coping with a variety of medical conditions and physical disabilities. An example is the Parent-to-Parent Program initiated by the Beach Center on Families and Disability at the University of Kansas to help parents of children who are newly diagnosed with developmental disabilities. In 1998, we adapted the Parent-to-Parent model for use with individuals with TBI and their family members. We are currently evaluating this program, known as the TBI Mentoring Partnership Program. This issue of TBI Consumer Report describes how the program works and initial data on its impact. The Report also discusses how similar peer mentoring programs might be established in other areas of the country.

What Is the TBI Mentoring Partnership Program (MPP)?

The TBI Mentoring Partnership Program was developed as a joint venture of the Research and Training Center (RTC) and the Brain Injury Association of New York State (BIANYS). In the program, trained TBI veterans are matched with peers across New York State seeking individualized support. The goals of partnerships are to provide emotional support, expand coping skills, improve knowledge about TBI (particularly resources) and teach advocacy skills.

In developing the program, BIANYS was responsible for the recruitment of individuals with TBI and family members as mentors (the veterans of TBI) and as partners (those seeking mentoring). BIANYS also selected program coordinators to provide continuing technical assistance to mentors. The RTC was responsible for mentor training and for program evaluation.

All mentors attended a full-day training workshop focused on enhancing their communication, listening and advocacy skills, as well as increasing their knowledge of TBI and community resources. A smaller group of mentors — the Hospital Advocacy Team (HAT) — received additional training, to play an active role in recruitment of potential partners within hospital settings.

Who Volunteered to Become Mentors?

The majority of individuals (70 percent) who volunteered as mentors are individuals with a TBI. Most (75 percent) have remained active as mentors, with many involved in four or more partnerships since initiation of the program. Mentors with TBI were as likely to be male as female; they were predominantly white (despite major efforts to recruit individuals from diversity backgrounds) and over the age of 30. Family members who volunteered as mentors were predominantly female, white, and somewhat older.

Who Participated as Partners?

Recruitment of individuals in need of peer support was done through outreach to acute care hospitals and rehabilitation facilities by the HAT team members; through a BIANYS phone hotline; through meetings with independent living centers, rehabilitation hospitals, and support groups; via presentations at local and state TBI conferences; and through a notice on the RTC's Web site. All persons seeking peer support completed an interview with program staff to determine their support needs and suitability for the program. The individual was then matched with a specific mentor who had a common medical and/or personal background. Partners were predominantly female, white, and between the ages of 31 and 45, with more individuals with TBI than family members seeking peer support.

What Was the Nature of the Mentoring Partnerships?

The duration of the partnership and its intensity was a decision made by the mentor and partner together. The majority of contacts were made via phone, with personal contact or e-mail also used. On average, partnerships lasted seven months and consisted of 13 contacts. Partnerships ended either because the partner's needs were satisfied or the partner elected to end the partnership. To date, more than 125 partnerships have been created, with approximately 50 percent completed.

What Were the Benefits of Peer Support for Partners?

Partners reported many positive effects of program participation on their lives:

• More knowledge about TBI
• Better ability to cope with the consequences of TBI, including depression and sadness
• Improved quality of life

Partners also reported that program participation had little if any impact on:

• Social support from family, friends, and community
• Coping with anger and anxiety

Family members, in general, were more conservative in their evaluation of the degree of the program's impact, tending to state that the program had "some" rather than a "major" impact across most areas explored in the study.

Comments from Partners

Comments from Partners with a TBI

"I am more open to people about what happened to me."

"My mentor stood by me through all the ups and downs and explained to me why I was going through that. She even heard me crying a lot."

"The program helped me with communication and socialization. It helped me get out more and talk to other people. I have reincorporated myself into society more."

"The mentoring program allowed me to speak my mind and be the way that I am."

"The mentoring program made me see that there were people out there willing to help."

Comments from Family Member Partners

"With time and more knowledge, I learned to separate a little from my daughter and her problems and to understand that she also has a life. I can be there for my daughter, but that is not my only role."

"The mentoring program gave me more of a feeling about how TBI can affect members of the family."

"I knew that if my own personal support group failed, I would have somewhere else to go to pick me up and put me on my feet again."

What Were the Benefits of Peer Support for Mentors?

Mentors described benefits in six areas:

• Increased ability to cope: better equipped to face challenges, to communicate effectively, and to be advocates for themselves and others in the community
• Satisfaction in helping others
• Shared experiences with another person
• Learning more about TBI and community resources
• Increased self-confidence and acceptance of brain injury
• Decreased isolation and improved ability to get along with others