NeuroRehabilitation An Inltrdllclplllllry .Ioulllll
ELSEVIER
NeuroRehabilitation 7 (1996) 211-218
A model system of traumatic brain injury peer support importance, development and process Gina Moreci Traumatic Brain Injury Model System of Care, 950 S. BascomAve. Suite #2011, San Jose, California 95128, USA
Abstract This manuscript describes the development and implementation of a unique volunteer service intended to meet the support needs of individuals with traumatic brain injury (TBI) and their families. As a part of the Traumatic Brain Injury Model System of Care, funded by the National Institute on Disability and Rehabilitation Research (NIDRR), the TBI Peer Support Program provides a valuable service of volunteer support from admission through community integration after discharge. TBI Peer Support Volunteers give individual attention to people with TBI and families through active listening, referral to community resources, and provision of information regarding TBI. The importance of including a structured individual peer support system is supported by clinical research review and patient and family interviews. The establishment and evolution of the program are described as well as suggestions for the creation and development of new volunteer TBI Peer Support Programs. Keywords: Peer support; Traumatic brain injury (TBI); Community program; Family support; Model system; Rehabilitation
1. A model system of TBI peer support The Traumatic Brain Injury Model System of Care at SCVMC in San Jose, California coordinates the activities of twenty volunteers who provide one-on-one peer support visits with individuals who have sustained a TBI and their families. The TBI Peer Support Program was developed in 1994 to assist with meeting the needs of the
* Corresponding author. Tel.: + 1 408 2959896; fax: + 1 408 2959913.
community of individuals with TBI and their families associated with the brain injury rehabilitation program. The TBI Peer Support volunteers (Peer Supporters) meet with physician and social service referred patients and families for an individual structured peer support visit in the rehabilitation unit. Peer Supporters visit in teams of two, three nights each week for two hours. Peer Supporters also make phone calls to offer support to individuals and their families who have left the rehabilitation unit. The Peer Supporters are understanding of TBI because they have either experienced
1053-8135/96/$15.00 © 1996 Elsevier Science Ireland Ltd. All rights reserved. PH S1053-8135(96) 00194-1
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a TBI themselves, or are a family member of a person with a TBI. The TBI Peer Support Program has been successful in implementing individual peer support services to over 200 individuals and families since 1994. Peer Supporters have increased from 13 in 1994 to 22 in 1996. Individual TBI Peer Support serves a different need than the system of support provided by groups of peers for peers. During an individual visit, the recipient is given the opportunity to be open and freely communicate on a one to one basis. A private visit encourages those being visited to feel attended to during a time of great need. Support Groups, although different in scope, are also useful for people with a TBI and their families. The Peer Supporters understand the importance of group interaction and encourage the persons visited to attend the group as well as receive individual peer support visits. 2. Importance of TBI peer support The perceived importance of individual TBI Peer Support services was identified in 1990 by Avis Stafford, EdD, who's son was involved in rehabilitation after a severe brain injury. Dr. Stafford volunteered to organize a philanthropic support group to raise money for the brain injury program. She found through her conversations with families and patients that grief support and resource information are crucial for families and persons with TBI during the rehabilitation phase and after discharge. Families strongly emphasized the need for a connection with others who have had a similar experience with TBI. The families agreed that speaking with a 'peer' was more comfortable than speaking with a professional because they felt truly 'understood'. The patients and families also felt that speaking confidentially with someone was very helpful for 'letting emotions out' without being interrupted or judged. 3. The family One of the immediate family needs after a loved ones' TBI as described by Witol [1] is clear and concise information about brain injury. The Peer Supporter can be available to discuss brain
injury with the family in detail. Through a Peer Supporter, the family has access to, for example, the Brain Injury Resource Center developed by the Brain Injury Association, many brain injury journals and books, and community resources from the local TBI Resource Directory. Families also express a feeling of unpreparedness for the traumatic event of a loved one's TBI, which has been found by Oddy et al. [2] to lead to feelings of fear, anger and anxiousness, and by many others [3-9], to lead to confusion, social isolation, and depression during the rehabilitation phase and long after rehabilitation. The response to a loved one's TBI may appear similar to the grief process with emotions of shock, denial, anger, hopelessness, guilt, and acceptance being experienced after death as defined by [10]. Much like a death in the family, a feeling of loss occurs due to the life transition and changes that take place as a result of the TBI. Lezak [11] describes the family needs changing in various stages after TBI as the emotions change from denial, anger, hopelessness, and guilt to acceptance. For many years, peer support has been available in Santa Clara County for individuals experiencing grief due to the loss of a loved one. The Centre for Living with Dying in Santa Clara provides a One-to-One Emotional Support Program and coordinates peer volunteers to provide individual emotional support to people who have lost a loved one. The TBI Peer Support Program recognizes the difference between death and a TBI. Although a TBI is a transition and does not have a conclusion, families have communicated a feeling of grief and can benefit from a similar approach. The peer support visit may alleviate some fear, confusion, frustration and denial. One comment made by a family member after a peer support visit from another family member was, 'They (Peer supporters) were easy to talk to and they provided me with new ideas to cope with the setbacks.' A family member may feel comforted or supported after talking out the feelings associated with TBI. 4. The individual During an individual peer support visit, the person with a TBI is given an opportunity to visit
G. Moreci / NeuroRehabilitation 7 (1996) 211-218
with another survivor. The Peer Supporter provides a listening ear and a sensitive awareness of the many issues concerning TBI. One patient comments on her experiences speaking with a Peer Supporter: 'I decided to talk to a Peer Supporter for some encouragement and mutual understanding.' Often a person with a TBI will eventu-
ally experience social isolation and depression. In a study by Rosenbaum [4], soldiers with severe brain injuries were reported to experience depression and changes in social life after injury. The relationship between peers can grow into a long term connection and reduce the chance for isolation and depression. Additional research is needed in the area of peer relations and it's effect on social isolation and depression among people with TBI. 5. The peer supporter The peer support relationship is also meaning-
ful for the Peer Supporter. Their self-esteem is
increased because they recognize their ability to help others smooth a difficult life transition. By supporting another person, the volunteer Peer Supporters can obtain a sense of altruism which can heighten self esteem. A volunteer Peer Supporter commented on his experience with the program: 'It not only increases my self esteem by keeping me associated with a group, it also helps me know I can be a productive part of society.' Another Peer Supporter comments, 'We get a feeling that the experiences we are going through, or have gone through, can have positive influences on other people.'
The esteem building value of the Peer Supporter has been indicated by feedback from volunteers. One Peer Supporter sent a message to the coordinators of the program, 'I wanted to
thank you for allowing me to heal my wounds from the past by helping others.' Another volunteer Peer Supporter stated: 'I did not think you knew how much you have done to make my life whole again-a journey impossible to measure. '
After a brain injury, a person may lose a job, family, friends, or momentum in life. The volunteer Peer Supporters feel like, and are, significant contributors in the community once again. The Supporters are a part of a group of other volun-
213
teers who have a similar life experience. This connection helps them to remember where they came from and, in turn, may give them the opportunity to set goals and improve their quality of life. As Winston Churchill said, 'We make a living by what we get, but we make a life by what we give. '
The TBI Peer Support 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. 6. Development of a TBI peer support volunteer program
The idea of providing individual peer support visits for people with brain injuries and their families can be implemented in many different settings and communities. The following framework for the development of the TBI Peer Support Program is intended to help in the development of similar programs. 6.1. Assess needs
Using an informal interview or simple questionnaire, ask past patients and family members to identify the most helpful supports during their rehabilitation stay and the types of support services still needed. Contact other rehabilitation facilities to find what support being provided. Review research in the area of TBI and support needs. Meet with current patients and families to obtain information regarding the type of support provided and preferred. A questionnaire, literature review, and interviews with patients and families led to this program. Visits with someone who had been through a similar experience can be very effective in providing the kind of support needed. 6.2. Create interest
People with significant experience in TBI will be most likely to get involved in the development of a peer support program. Recruit people to attend brainstorming meetings by sending an invitation along with the questionnaire sent during the assessment process. Create interest by de-
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scribing the general intent of the meetings, such as; to develop a service that will help improve the emotional support provided on the rehabilitation unit. Decide upon a Program Coordinator if the position is not already assumed. The Program Coordinator should have good organizational skills in order to work with individuals who have sustained a traumatic brain injury; a genuine concern for people; a connection to the facility where support will be provided; and personal or professional experience in TBI.
an opportunity for people with a TBI and their families to feel supported. The Peer Supporters provide TBI resources and information to increase education and awareness and actively listen to the individuals. The mission statement and objective information is disseminated through a professional brochure describing the TBI Peer Support Program.
provides a clear structure for the Peer Supporters to participate in the individual visits and other program activities. Through annual training seminars and ongoing bi-monthly informal training meetings, the Program Coordinator helps to keep the volunteer Peer Supporter reminded of the purpose of their activities. Peer Supporters commit to being scheduled for a peer support visit at least once per month. Peer Supporters travel in teams of two. They show up at the rehabilitation center with their partner on a scheduled night to visit with the referred patients and families. The team approach creates a feeling of safety, support, professionalism, and organization. For instance, if one volunteer is better with directions or reading than the other, they can work together to be more effective in providing support needed. Therapy and nursing staff can be helpful in determining the best time for visits. Visits occur three nights each week from 18.00 h to 20.00 h. Two hours is enough time to visit with at least four patients and their families, and also have time for notes. The TBI Peer Support Program provides the following tools that help support the structure of the program: monthly calendars with scheduled Peer Support visits, weekly documentation regarding each patient and family to be visited, and a manual of procedures for filling out all essential written documentation, summaries of program activities, a volunteer job description, the grief process handouts, active listening handouts, communication handouts, and TBI education handouts. Requests for paperwork completed are kept to a minimum. The Program Coordinator is responsible for the delegation of tasks and the coordination of task completion. The structure provided ensures minimal misunderstandings.
6.4. Develop a program structure
6.5. Obtain funding
Once a mission statement has been established and the Peer Supporters are committed to the goals and objectives of the program, a guide is needed for defining each of the activities. A clear structure assists Peer Supporters and recipients to understand the program activities. The Program Coordinator for the TBI Peer Support Program
There are a variety of potential funding sources; individuals, foundations, private corporations, and public or government funds. To begin the process of developing a TBI peer support program, a small amount of funding is needed for the assessment process and brainstorming meetings. Funding needs may increase when materials for a
6.3. Develop a mission statement Create and clearly define the program goals and objectives with established program members. A mission statement describes the overall purpose of the program. Goals and objectives give direction and guidance to actively work towards the purpose of the program. The purpose, or mission, of TBI Peer Support Program was created by Peer Supporters during the many brainstorming meetings: 'The volunteers of the TBI Peer
Support Program are dedicated to serving individuals recovering from a traumatic brain injury and their families. Understanding the difficulties that are encountered, as well as the breakthroughs possible, we support one another. This program is committed to the idea that anyone requiring assistance, receive it.' The primary goal of the program is to provide
G. Moreci / NellroRehabilitation 7 (1996) 211-218
structured program are developed. The TBI Peer Support program employs a part-time coordinator, and disseminates information about the program in the form of a brochure. See the sample budget (appendix A) for a more detailed description of funding needs. 6.6. Train volunteers
Potential volunteers are carefully screened prior to participating in the TBI Peer Support Program. A private interview, references, and a resume are required of applicants. The criteria used to select appropriate volunteers are: experience with TBI, positive references, and personal attributes such as genuineness, ability to listen, appropriate empathy and a positive regard for people. Professionals, such as the hospital neuropsychologist, and experts in the areas of the grief process, active listening, communication, hospital procedures, and basic brain injury education volunteer their time to train the Peer Supporters once per year. Training is an ongoing process. During bi-monthly training meetings, the volunteer Peer Supporters are given an opportunity to discuss challenges to providing support, enhancing communication skills, basic procedures of the job, and important issues regarding grief, TBI, and resources. There is also a social component to the bi-monthly meetings to provide an opportunity for the volunteers to get to know each other better. A cohesive group is important and allows the Peer Supporters to receive emotional support from each other. The TBI Peer Support Program is designed to be flexible to meet the ever changing needs of the volunteer Peer Supporters. For example, one obstacle was overcome when a Peer Supporter asked for an additional meeting to organize the support phone calls made to outpatients. She asked that the group meet to help her because she was having trouble with motivating herself to initiate the initial phone calls. Now, the Peer Supporters have chosen to hold a monthly meeting to complete the task of making follow up phone calls to those who have left the hospital.
215
6.7. Evaluate the program
Evaluate the program using written feedback from Peer Supporters. Use satisfaction surveys completed by the recipients of the visits to evaluate the effectiveness and usefulness of the visits themselves. See the Satisfaction Survey (appendix B) for an example of an evaluation tool. Keep tallies of numbers of contacts and the nature of assistance provided. Use open discussions and evaluation tools to improve the training meetings. Meeting topics should change with the needs of the Peer Supporters. One month a Peer Supporter may need a chance to talk about how to cope with an emotional response experienced when visiting with a patient. Another month a Peer Supporter may want to review the procedures of filling out the summary form after a visit. Provide both informal and formal feedback to the Peer Supporters. During meetings, assure the Peer Supporters that they are an integral part of the program and it would not be as successful without every one of them. Acknowledge the volunteers frequently and differently for each of their contributions (i.e. send a thank you card, say 'thank you' in front of the group, hold special lunch or dinner meetings, etc.) 6.8. Establish group identity
Provide a monthly calendar, create an area to work in the hospital, and obtain a commitment in the form of an annual contract to create a feeling of identity among the Peer Supporters. Make T-shirts, name badges, volunteer manuals, and business cards to create a visual identity. The professional identity is enhanced with monthly reports describing the program activities (i.e. number of visits completed, type of information provided to patients and families.) 6.9. Generate community awareness
Participate as a volunteer group in events each year that showcase the services provided. For instance; The TBI Peer Support Program is actively involved in the 'Christmas in the Park,' a holiday display at a local park; 'Tapestry in Tal-
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ent,' an arts and crafts fair with community involvement; the 'Rehabilitation Reunion' for those who have left the hospital; and the 'California Head Injury Foundation Walk n' Roll-a-thon'. The volunteer Peer Supporters and Program Coordinator also exhibit, attend, and speak at brain injury related conferences, write articles in TBI newsletters and magazines, and communicate on a community level through support groups to advertise services. 7. Why TBI peer support? The importance of individual peer support visits is supported by positive conversations with the patients and families who receive support, demonstrated by research in the area of family and patient support needs, and documented through responses from families and patients of successful peer support visits. The TBI Peer Support Program significantly affects the lives of the Peer Supporters through a feeling of self esteem. The TBI Peer Support Program provides the Peer Supporters an opportunity to transform the traumatic experience of a brain injury into an experience to assist others. Supporting other people helps the volunteers to make sense of the injury and also reminds them that they are purposeful people. The development of a TBI Peer Support Program can be accomplished by a dedicated group of people. The group must be genuinely interested in the well being of people with TBI. The life transition associated with a TBI can be transformed into a more positive experience through the process of structuring a clearly defined support program. The nine aspects involved in the development of the TBI Peer Support Program have been described as: (1) the assessment process, (2) creating interest, (3) developing a mission statement, (4) planning a program structure, (5) defining funding issues, (6) preparing a training program, (7) evaluating the program, (8) establishing a program identity, and (9) generating community awareness.
Acknowledgements Funded by the National Institute on Disability and Rehabilitation Research, U.S. Department of Education. Grant # H133A20002 Appendix TEl peer support program sample budget
This budget is intended to serve as a rough estimate and is not inclusive of activities such as travel expenses, community exposure activities, special resource materials, or volunteer gifts. This budget also assumes that the coordinator of the program will have access to a computer, printer, fax, and telephone. Year one expenses ($) Start-up-needs assessment Paper 1000 ream Envelopes 500 Postage Self addressed returned Labels
10 20 320 320 27
Subtotal
697
Training Rental room Food 20 people Manuals 20 people Speakers C>verheads Name tags Pictures of volunteers Signs Balloons T-shirts
100 207 140 100 15 60 100 25 8 200
Subtotal
955
Part-time coordinator (range: $10400-$20800) 15600 Monthly meetings ($25 each) 300 Dinner bi-monthly meetings ($20 each) 120 Monthly schedules 10 Fax/telephone 240
C. Moreci / NeuroRehabilitation 7 (1996) 211-218
Total estimated annual budget
17922
Appendix B
TBI Peer Support Program Satisfaction survey Thank you for taking the time to fill out this short survey. By completing this survey you are assisting us in evaluating the TBI Peer Support Program. Our goal is to continue to provide the best support that we can as a volunteer support program. Your comments are important to us. How often did you talk with a peer support volunteer? --One time --Several times (approx.# of times = --) - - I am still in contact with a peer supporter 2. - - I would still like to be in contact with a peer supporter when I'm home. Please see below phone # and address. 1.
3.
217
Please check as many reason(s) as you would like. Why did you chose to visit with a Peer Support volunteer? --To talk with someone about my injury --To listen to the stories of the peer supporters --To obtain information about brain injury --To obtain resources in the community --To talk with someone who really understands --To understand more about brain injury --To feel more in control of my situation Any other reasons:
5. Have you had interaction with other groups or services that deal with traumatic brain injury rehabilitation? --Yes (If yes, please list these groups or agencies below) --No Groups and agencies:
6. Please list any suggestions you have for the TBI Peer Support Program:
7.
Do you think the TBI Peer Support Program is a good idea? (circle your response) 1
doesn't work
2
3 4 5 just okay great idea!!
Name: - - - Date Completed: - - Address: - - - - - - - - - - - Phone:------------Thank you
References Witol A. TBI peer support: importance, development, and process: family and patient needs. Presented research at the Models and Systems Conference, Washington DC, April 1996. [2] Oddy M, Humphry M, Uttley D. Stresses upon the relatives of head-injured patients. Br J Psychiatry [1]
1978;133:507-513.
[3] Romano MD. Family response to traumatic head injury. Scand J Rehabil Med 1974;6:1-4. [4] Rosenbaum M, Najensen T. Changes in life patterns and symptoms of low mood as reported by wives of severely brain-injured soldiers. J Consult Clin Psychol 1976:44:881-888.
4. Please list any comments (positive or negative) you would like to make about the visits or calls you received from a Peer Supporter?
[5] Lezak M. The Professional's Role in Serving Patients and Families. Paper presented at the Fourth Annual Conference on Head Trauma Rehabilitation: Coma to Community. San Jose, CA. 1981.
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I NeuroRehabilitation 7 (J996) 211-218
[6] l..ezak M, Cosgrove J, O'Brien K, Wooster K. Relationship between personality disorders, social disturbances and physical disability following traumatic brain injury. Paper presented at the 8th Annual Meeting of International Neuropsychological Society, San Francisco, February 1980. [7] Livingston BG, Brooks DN, Bond MR. Three months after severe head injury: psychiatric and social impact on relatives. J Neurosurg Psychiatry 1985;48:870-875. [8] Stern JM, Sazbon L, Becker E, et al. Severe behavioral
disturbance in families of patients with prolonged coma. Brain Injury 1988;2:259-262. [9] Florian V, Katz S, Lahav V. Impact of traumatic brain damage on family dynamics and functioning: a review. Brain Injury 1989;3:219-233. [10] Kubler-Ross E. On Death and Dying, McMillan, New York 1969. [11] l..ezak M. Psychological implications of traumatic brain damage for the patient's family. Rehabil Psychol 1986;3:241-250.
ELSEVIER
NeuroRehabilitation 7 (1996) 211-218
A model system of traumatic brain injury peer support importance, development and process Gina Moreci Traumatic Brain Injury Model System of Care, 950 S. BascomAve. Suite #2011, San Jose, California 95128, USA
Abstract This manuscript describes the development and implementation of a unique volunteer service intended to meet the support needs of individuals with traumatic brain injury (TBI) and their families. As a part of the Traumatic Brain Injury Model System of Care, funded by the National Institute on Disability and Rehabilitation Research (NIDRR), the TBI Peer Support Program provides a valuable service of volunteer support from admission through community integration after discharge. TBI Peer Support Volunteers give individual attention to people with TBI and families through active listening, referral to community resources, and provision of information regarding TBI. The importance of including a structured individual peer support system is supported by clinical research review and patient and family interviews. The establishment and evolution of the program are described as well as suggestions for the creation and development of new volunteer TBI Peer Support Programs. Keywords: Peer support; Traumatic brain injury (TBI); Community program; Family support; Model system; Rehabilitation
1. A model system of TBI peer support The Traumatic Brain Injury Model System of Care at SCVMC in San Jose, California coordinates the activities of twenty volunteers who provide one-on-one peer support visits with individuals who have sustained a TBI and their families. The TBI Peer Support Program was developed in 1994 to assist with meeting the needs of the
* Corresponding author. Tel.: + 1 408 2959896; fax: + 1 408 2959913.
community of individuals with TBI and their families associated with the brain injury rehabilitation program. The TBI Peer Support volunteers (Peer Supporters) meet with physician and social service referred patients and families for an individual structured peer support visit in the rehabilitation unit. Peer Supporters visit in teams of two, three nights each week for two hours. Peer Supporters also make phone calls to offer support to individuals and their families who have left the rehabilitation unit. The Peer Supporters are understanding of TBI because they have either experienced
1053-8135/96/$15.00 © 1996 Elsevier Science Ireland Ltd. All rights reserved. PH S1053-8135(96) 00194-1
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G. Moreci / NeuroRehabilitation 7 (1996) 211-218
a TBI themselves, or are a family member of a person with a TBI. The TBI Peer Support Program has been successful in implementing individual peer support services to over 200 individuals and families since 1994. Peer Supporters have increased from 13 in 1994 to 22 in 1996. Individual TBI Peer Support serves a different need than the system of support provided by groups of peers for peers. During an individual visit, the recipient is given the opportunity to be open and freely communicate on a one to one basis. A private visit encourages those being visited to feel attended to during a time of great need. Support Groups, although different in scope, are also useful for people with a TBI and their families. The Peer Supporters understand the importance of group interaction and encourage the persons visited to attend the group as well as receive individual peer support visits. 2. Importance of TBI peer support The perceived importance of individual TBI Peer Support services was identified in 1990 by Avis Stafford, EdD, who's son was involved in rehabilitation after a severe brain injury. Dr. Stafford volunteered to organize a philanthropic support group to raise money for the brain injury program. She found through her conversations with families and patients that grief support and resource information are crucial for families and persons with TBI during the rehabilitation phase and after discharge. Families strongly emphasized the need for a connection with others who have had a similar experience with TBI. The families agreed that speaking with a 'peer' was more comfortable than speaking with a professional because they felt truly 'understood'. The patients and families also felt that speaking confidentially with someone was very helpful for 'letting emotions out' without being interrupted or judged. 3. The family One of the immediate family needs after a loved ones' TBI as described by Witol [1] is clear and concise information about brain injury. The Peer Supporter can be available to discuss brain
injury with the family in detail. Through a Peer Supporter, the family has access to, for example, the Brain Injury Resource Center developed by the Brain Injury Association, many brain injury journals and books, and community resources from the local TBI Resource Directory. Families also express a feeling of unpreparedness for the traumatic event of a loved one's TBI, which has been found by Oddy et al. [2] to lead to feelings of fear, anger and anxiousness, and by many others [3-9], to lead to confusion, social isolation, and depression during the rehabilitation phase and long after rehabilitation. The response to a loved one's TBI may appear similar to the grief process with emotions of shock, denial, anger, hopelessness, guilt, and acceptance being experienced after death as defined by [10]. Much like a death in the family, a feeling of loss occurs due to the life transition and changes that take place as a result of the TBI. Lezak [11] describes the family needs changing in various stages after TBI as the emotions change from denial, anger, hopelessness, and guilt to acceptance. For many years, peer support has been available in Santa Clara County for individuals experiencing grief due to the loss of a loved one. The Centre for Living with Dying in Santa Clara provides a One-to-One Emotional Support Program and coordinates peer volunteers to provide individual emotional support to people who have lost a loved one. The TBI Peer Support Program recognizes the difference between death and a TBI. Although a TBI is a transition and does not have a conclusion, families have communicated a feeling of grief and can benefit from a similar approach. The peer support visit may alleviate some fear, confusion, frustration and denial. One comment made by a family member after a peer support visit from another family member was, 'They (Peer supporters) were easy to talk to and they provided me with new ideas to cope with the setbacks.' A family member may feel comforted or supported after talking out the feelings associated with TBI. 4. The individual During an individual peer support visit, the person with a TBI is given an opportunity to visit
G. Moreci / NeuroRehabilitation 7 (1996) 211-218
with another survivor. The Peer Supporter provides a listening ear and a sensitive awareness of the many issues concerning TBI. One patient comments on her experiences speaking with a Peer Supporter: 'I decided to talk to a Peer Supporter for some encouragement and mutual understanding.' Often a person with a TBI will eventu-
ally experience social isolation and depression. In a study by Rosenbaum [4], soldiers with severe brain injuries were reported to experience depression and changes in social life after injury. The relationship between peers can grow into a long term connection and reduce the chance for isolation and depression. Additional research is needed in the area of peer relations and it's effect on social isolation and depression among people with TBI. 5. The peer supporter The peer support relationship is also meaning-
ful for the Peer Supporter. Their self-esteem is
increased because they recognize their ability to help others smooth a difficult life transition. By supporting another person, the volunteer Peer Supporters can obtain a sense of altruism which can heighten self esteem. A volunteer Peer Supporter commented on his experience with the program: 'It not only increases my self esteem by keeping me associated with a group, it also helps me know I can be a productive part of society.' Another Peer Supporter comments, 'We get a feeling that the experiences we are going through, or have gone through, can have positive influences on other people.'
The esteem building value of the Peer Supporter has been indicated by feedback from volunteers. One Peer Supporter sent a message to the coordinators of the program, 'I wanted to
thank you for allowing me to heal my wounds from the past by helping others.' Another volunteer Peer Supporter stated: 'I did not think you knew how much you have done to make my life whole again-a journey impossible to measure. '
After a brain injury, a person may lose a job, family, friends, or momentum in life. The volunteer Peer Supporters feel like, and are, significant contributors in the community once again. The Supporters are a part of a group of other volun-
213
teers who have a similar life experience. This connection helps them to remember where they came from and, in turn, may give them the opportunity to set goals and improve their quality of life. As Winston Churchill said, 'We make a living by what we get, but we make a life by what we give. '
The TBI Peer Support 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. 6. Development of a TBI peer support volunteer program
The idea of providing individual peer support visits for people with brain injuries and their families can be implemented in many different settings and communities. The following framework for the development of the TBI Peer Support Program is intended to help in the development of similar programs. 6.1. Assess needs
Using an informal interview or simple questionnaire, ask past patients and family members to identify the most helpful supports during their rehabilitation stay and the types of support services still needed. Contact other rehabilitation facilities to find what support being provided. Review research in the area of TBI and support needs. Meet with current patients and families to obtain information regarding the type of support provided and preferred. A questionnaire, literature review, and interviews with patients and families led to this program. Visits with someone who had been through a similar experience can be very effective in providing the kind of support needed. 6.2. Create interest
People with significant experience in TBI will be most likely to get involved in the development of a peer support program. Recruit people to attend brainstorming meetings by sending an invitation along with the questionnaire sent during the assessment process. Create interest by de-
214
G. Moreci / NeuroRehabilitation 7 (J996) 211-218
scribing the general intent of the meetings, such as; to develop a service that will help improve the emotional support provided on the rehabilitation unit. Decide upon a Program Coordinator if the position is not already assumed. The Program Coordinator should have good organizational skills in order to work with individuals who have sustained a traumatic brain injury; a genuine concern for people; a connection to the facility where support will be provided; and personal or professional experience in TBI.
an opportunity for people with a TBI and their families to feel supported. The Peer Supporters provide TBI resources and information to increase education and awareness and actively listen to the individuals. The mission statement and objective information is disseminated through a professional brochure describing the TBI Peer Support Program.
provides a clear structure for the Peer Supporters to participate in the individual visits and other program activities. Through annual training seminars and ongoing bi-monthly informal training meetings, the Program Coordinator helps to keep the volunteer Peer Supporter reminded of the purpose of their activities. Peer Supporters commit to being scheduled for a peer support visit at least once per month. Peer Supporters travel in teams of two. They show up at the rehabilitation center with their partner on a scheduled night to visit with the referred patients and families. The team approach creates a feeling of safety, support, professionalism, and organization. For instance, if one volunteer is better with directions or reading than the other, they can work together to be more effective in providing support needed. Therapy and nursing staff can be helpful in determining the best time for visits. Visits occur three nights each week from 18.00 h to 20.00 h. Two hours is enough time to visit with at least four patients and their families, and also have time for notes. The TBI Peer Support Program provides the following tools that help support the structure of the program: monthly calendars with scheduled Peer Support visits, weekly documentation regarding each patient and family to be visited, and a manual of procedures for filling out all essential written documentation, summaries of program activities, a volunteer job description, the grief process handouts, active listening handouts, communication handouts, and TBI education handouts. Requests for paperwork completed are kept to a minimum. The Program Coordinator is responsible for the delegation of tasks and the coordination of task completion. The structure provided ensures minimal misunderstandings.
6.4. Develop a program structure
6.5. Obtain funding
Once a mission statement has been established and the Peer Supporters are committed to the goals and objectives of the program, a guide is needed for defining each of the activities. A clear structure assists Peer Supporters and recipients to understand the program activities. The Program Coordinator for the TBI Peer Support Program
There are a variety of potential funding sources; individuals, foundations, private corporations, and public or government funds. To begin the process of developing a TBI peer support program, a small amount of funding is needed for the assessment process and brainstorming meetings. Funding needs may increase when materials for a
6.3. Develop a mission statement Create and clearly define the program goals and objectives with established program members. A mission statement describes the overall purpose of the program. Goals and objectives give direction and guidance to actively work towards the purpose of the program. The purpose, or mission, of TBI Peer Support Program was created by Peer Supporters during the many brainstorming meetings: 'The volunteers of the TBI Peer
Support Program are dedicated to serving individuals recovering from a traumatic brain injury and their families. Understanding the difficulties that are encountered, as well as the breakthroughs possible, we support one another. This program is committed to the idea that anyone requiring assistance, receive it.' The primary goal of the program is to provide
G. Moreci / NellroRehabilitation 7 (1996) 211-218
structured program are developed. The TBI Peer Support program employs a part-time coordinator, and disseminates information about the program in the form of a brochure. See the sample budget (appendix A) for a more detailed description of funding needs. 6.6. Train volunteers
Potential volunteers are carefully screened prior to participating in the TBI Peer Support Program. A private interview, references, and a resume are required of applicants. The criteria used to select appropriate volunteers are: experience with TBI, positive references, and personal attributes such as genuineness, ability to listen, appropriate empathy and a positive regard for people. Professionals, such as the hospital neuropsychologist, and experts in the areas of the grief process, active listening, communication, hospital procedures, and basic brain injury education volunteer their time to train the Peer Supporters once per year. Training is an ongoing process. During bi-monthly training meetings, the volunteer Peer Supporters are given an opportunity to discuss challenges to providing support, enhancing communication skills, basic procedures of the job, and important issues regarding grief, TBI, and resources. There is also a social component to the bi-monthly meetings to provide an opportunity for the volunteers to get to know each other better. A cohesive group is important and allows the Peer Supporters to receive emotional support from each other. The TBI Peer Support Program is designed to be flexible to meet the ever changing needs of the volunteer Peer Supporters. For example, one obstacle was overcome when a Peer Supporter asked for an additional meeting to organize the support phone calls made to outpatients. She asked that the group meet to help her because she was having trouble with motivating herself to initiate the initial phone calls. Now, the Peer Supporters have chosen to hold a monthly meeting to complete the task of making follow up phone calls to those who have left the hospital.
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6.7. Evaluate the program
Evaluate the program using written feedback from Peer Supporters. Use satisfaction surveys completed by the recipients of the visits to evaluate the effectiveness and usefulness of the visits themselves. See the Satisfaction Survey (appendix B) for an example of an evaluation tool. Keep tallies of numbers of contacts and the nature of assistance provided. Use open discussions and evaluation tools to improve the training meetings. Meeting topics should change with the needs of the Peer Supporters. One month a Peer Supporter may need a chance to talk about how to cope with an emotional response experienced when visiting with a patient. Another month a Peer Supporter may want to review the procedures of filling out the summary form after a visit. Provide both informal and formal feedback to the Peer Supporters. During meetings, assure the Peer Supporters that they are an integral part of the program and it would not be as successful without every one of them. Acknowledge the volunteers frequently and differently for each of their contributions (i.e. send a thank you card, say 'thank you' in front of the group, hold special lunch or dinner meetings, etc.) 6.8. Establish group identity
Provide a monthly calendar, create an area to work in the hospital, and obtain a commitment in the form of an annual contract to create a feeling of identity among the Peer Supporters. Make T-shirts, name badges, volunteer manuals, and business cards to create a visual identity. The professional identity is enhanced with monthly reports describing the program activities (i.e. number of visits completed, type of information provided to patients and families.) 6.9. Generate community awareness
Participate as a volunteer group in events each year that showcase the services provided. For instance; The TBI Peer Support Program is actively involved in the 'Christmas in the Park,' a holiday display at a local park; 'Tapestry in Tal-
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ent,' an arts and crafts fair with community involvement; the 'Rehabilitation Reunion' for those who have left the hospital; and the 'California Head Injury Foundation Walk n' Roll-a-thon'. The volunteer Peer Supporters and Program Coordinator also exhibit, attend, and speak at brain injury related conferences, write articles in TBI newsletters and magazines, and communicate on a community level through support groups to advertise services. 7. Why TBI peer support? The importance of individual peer support visits is supported by positive conversations with the patients and families who receive support, demonstrated by research in the area of family and patient support needs, and documented through responses from families and patients of successful peer support visits. The TBI Peer Support Program significantly affects the lives of the Peer Supporters through a feeling of self esteem. The TBI Peer Support Program provides the Peer Supporters an opportunity to transform the traumatic experience of a brain injury into an experience to assist others. Supporting other people helps the volunteers to make sense of the injury and also reminds them that they are purposeful people. The development of a TBI Peer Support Program can be accomplished by a dedicated group of people. The group must be genuinely interested in the well being of people with TBI. The life transition associated with a TBI can be transformed into a more positive experience through the process of structuring a clearly defined support program. The nine aspects involved in the development of the TBI Peer Support Program have been described as: (1) the assessment process, (2) creating interest, (3) developing a mission statement, (4) planning a program structure, (5) defining funding issues, (6) preparing a training program, (7) evaluating the program, (8) establishing a program identity, and (9) generating community awareness.
Acknowledgements Funded by the National Institute on Disability and Rehabilitation Research, U.S. Department of Education. Grant # H133A20002 Appendix TEl peer support program sample budget
This budget is intended to serve as a rough estimate and is not inclusive of activities such as travel expenses, community exposure activities, special resource materials, or volunteer gifts. This budget also assumes that the coordinator of the program will have access to a computer, printer, fax, and telephone. Year one expenses ($) Start-up-needs assessment Paper 1000 ream Envelopes 500 Postage Self addressed returned Labels
10 20 320 320 27
Subtotal
697
Training Rental room Food 20 people Manuals 20 people Speakers C>verheads Name tags Pictures of volunteers Signs Balloons T-shirts
100 207 140 100 15 60 100 25 8 200
Subtotal
955
Part-time coordinator (range: $10400-$20800) 15600 Monthly meetings ($25 each) 300 Dinner bi-monthly meetings ($20 each) 120 Monthly schedules 10 Fax/telephone 240
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Total estimated annual budget
17922
Appendix B
TBI Peer Support Program Satisfaction survey Thank you for taking the time to fill out this short survey. By completing this survey you are assisting us in evaluating the TBI Peer Support Program. Our goal is to continue to provide the best support that we can as a volunteer support program. Your comments are important to us. How often did you talk with a peer support volunteer? --One time --Several times (approx.# of times = --) - - I am still in contact with a peer supporter 2. - - I would still like to be in contact with a peer supporter when I'm home. Please see below phone # and address. 1.
3.
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Please check as many reason(s) as you would like. Why did you chose to visit with a Peer Support volunteer? --To talk with someone about my injury --To listen to the stories of the peer supporters --To obtain information about brain injury --To obtain resources in the community --To talk with someone who really understands --To understand more about brain injury --To feel more in control of my situation Any other reasons:
5. Have you had interaction with other groups or services that deal with traumatic brain injury rehabilitation? --Yes (If yes, please list these groups or agencies below) --No Groups and agencies:
6. Please list any suggestions you have for the TBI Peer Support Program:
7.
Do you think the TBI Peer Support Program is a good idea? (circle your response) 1
doesn't work
2
3 4 5 just okay great idea!!
Name: - - - Date Completed: - - Address: - - - - - - - - - - - Phone:------------Thank you
References Witol A. TBI peer support: importance, development, and process: family and patient needs. Presented research at the Models and Systems Conference, Washington DC, April 1996. [2] Oddy M, Humphry M, Uttley D. Stresses upon the relatives of head-injured patients. Br J Psychiatry [1]
1978;133:507-513.
[3] Romano MD. Family response to traumatic head injury. Scand J Rehabil Med 1974;6:1-4. [4] Rosenbaum M, Najensen T. Changes in life patterns and symptoms of low mood as reported by wives of severely brain-injured soldiers. J Consult Clin Psychol 1976:44:881-888.
4. Please list any comments (positive or negative) you would like to make about the visits or calls you received from a Peer Supporter?
[5] Lezak M. The Professional's Role in Serving Patients and Families. Paper presented at the Fourth Annual Conference on Head Trauma Rehabilitation: Coma to Community. San Jose, CA. 1981.
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[6] l..ezak M, Cosgrove J, O'Brien K, Wooster K. Relationship between personality disorders, social disturbances and physical disability following traumatic brain injury. Paper presented at the 8th Annual Meeting of International Neuropsychological Society, San Francisco, February 1980. [7] Livingston BG, Brooks DN, Bond MR. Three months after severe head injury: psychiatric and social impact on relatives. J Neurosurg Psychiatry 1985;48:870-875. [8] Stern JM, Sazbon L, Becker E, et al. Severe behavioral
disturbance in families of patients with prolonged coma. Brain Injury 1988;2:259-262. [9] Florian V, Katz S, Lahav V. Impact of traumatic brain damage on family dynamics and functioning: a review. Brain Injury 1989;3:219-233. [10] Kubler-Ross E. On Death and Dying, McMillan, New York 1969. [11] l..ezak M. Psychological implications of traumatic brain damage for the patient's family. Rehabil Psychol 1986;3:241-250.
