TBI Consumer Report: Peer Mentoring

Mount Sinai Medical Center
TBI Consumer Report: Peer Mentoring

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

Comments from Mentors

"I am able to deal with my emotional problems better because I have learned that I am not the only one who is going through this problem."

"I have enjoyed feeling as though I could be helpful to someone — that from my family's misfortune, something good can be found."

"The mentoring program is a precious link for most. Because we can't remember yesterday and even sometimes what we had for breakfast, brain injured individuals benefit uniquely from having a mentor. It is often the mentor who instills hope, energy, and joy by reminding us of all we have accomplished. The program has defined the meaning of sharing and concern."

"The opportunity to connect with someone else who has been through a similar trauma and who has experienced the same kind of family upheaval and who is trying to rebuild her own life serves to lessen the isolation that trauma can bring. My partner has enriched my life with her courage."

"It has let me see how far I have come since the bad, confused beginning of this journey. It let me feel proud that I was accepted to be a mentor; it made me feel I must be okay if they think I can help others. It has given me the courage to try harder and to overcome some of my remaining problems. I wish I had a mentor when I was starting the journey of my recovery."

What Have We Learned?

The evaluation of the Mentoring Partnership Program is continuing, but initial results show that individuals with TBI and family members have been empowered in shaping their own program of mutual support. As partners, individuals formerly isolated after the onset of TBI have had the benefit of a connection with someone who has been there. As a direct result of the program, mentors have been empowered and now serve as resources to others in the community. This type of program is a win-win situation for all involved.

Can the Mentoring Program Be Replicated in other Communities?

Expansion of the mentoring program model to other communities is the logical next step. Using technical assistance from RTC staff, the Brain Injury Association of New Jersey created a similar program (TBI Family CARE) as part of a project funded by the Health Resources and Services Administration. Preliminary findings from New Jersey suggest that the Family CARE mentors and partners are similar to those in the RTC program, and satisfaction with the program is positive for mentors and partners alike. Suggestions for those interested in establishing a peer mentoring program are provided below:

Starting a Peer Mentoring Program

Based on the RTC's experiences with programs in New York and in New Jersey, we have found that several key elements are associated with initiation and maintenance of quality programs:

  • An organization is needed to provide structure and support for program development and maintenance.
  • Financial resources are needed to support one or more individuals to administer the program, as well as to cover expenses associated with mentoring (e.g., phone, travel).
  • Mentors need systematic training, as well as continuously available technical support from program staff.
  • Program staff needs to engage in systematic quality assurance, gaining feedback from both mentors and partners to insure that partnerships are addressing needs.
  • Access to a large number of individuals with TBI and family members must be obtained, to insure recruitment of qualified mentors.
  • A network of community services (e.g., rehabilitation units, support groups, acute care facilities) is helpful in providing access for recruitment of individuals in need of peer support.

The RTC suggests that agencies and community service settings work with their state brain injury association in planning program development. In this process, consider utilizing us to provide technical assistance for program development (including training), implementation and quality assurance. Individuals with TBI and family members who would like to see a mentoring program initiated locally, should contact their state brain injury association to encourage its involvement in working with others to get such a program started. Additional resources are available in a Program Manual designed to help others develop TBI peer mentoring programs.

For More Information

Hibbard, M.R., Cantor, J.B., Charatz, H.J., Rosenthal, R., Ashman, T.A., Gundersen, N., Ireland-Knight, L., Avner, J., and Gartner, J. (2002). Peer support in the community: Initial findings of a mentoring program for individuals with TBI and their families. Journal of Head Trauma Rehabilitation, 17, 112-131.

TBI Consumer Report is a publication of the Research and Training Center on Community Integration of Individuals with Traumatic Brain Injury, supported between 1993 and 2004 by Grant No. H133B980013, to the Department of Rehabilitation Medicine, Mount Sinai School of Medicine, New York City, from the National Institute on Disability and Rehabilitation Research, United States Department of Education. The contents of this report do not necessarily represent the views of the Department of Education; readers should not assume endorsement by the federal government. Partial funding for the Peer Mentoring Program was provided by the Jacob and Valeria Langeloth Foundation, New York City.

Posted on BrainLine July 25, 2008.

From Mount Sinai Medical Center. www.mssm.edu.

Comments (2)

My brother is currently at a hospital in Rhode Island. He suffered from a TBI after falling 3 stories. The TBI after a skull fracture and he broke only one bone in his arm amazingly. The rest of him was fine. He was in a medical coma, breathing on his own although he was given the g tube and trachyotomy. I am here 37 days later and the trach has been removed and yesterday he peeled his own Clementine and ate it, has screwed on caps to bottles with his good arm and is able to hold up fingers. (Sometimes)

It depends on who my brother is speaking to. Someone evaluated him yesterday and said "he wasnt participating" and made the decision for no rehab yet- but a couple options of nursing homes. He is a 37 year old male who is a veteran. We want rehab!!!

I am asking for help.

Can someone please direct me to where I can find a mentor for my brother. Someone who has been through a TBI that is willing to share their experience and strength with him?

He has mouthed words here and there and mumbled them but then seems embarrassed at times. I recognize the look on his face. He was evaluated today by the psych and she said he appeared depressed. (Naturally)

He has plenty of family support and has smiled, laughed and certainly cried- however - we have been unable to relate and tell him with certainty we understand and know how he feels. Sensitivity, identification, hope.

I just need the right direction and I will do it.

Hi Jean, I'm so sorry that you, your brother, and your family are going through this. It sounds like your brother is lucky to have such a great sister like you!

A good place to start would be reaching out to the Brain Injury Association of Rhode Island Resource Center:
401-228-3319
braininjurycenter@biara.org
https://biari.org

They will be able to help you and your family get connected with resources in your area. A great place for your brother to find uspport and understanding is at a support group. This page lists support groups all around rhode island: https://biari.org/resources/support-groups/

There are also support groups for caregivers/family members. You could check out some of those for yourself!