Objectives: To evaluate the impact of a community-based peer support program for individuals and their family members following traumatic brain injury (TBI).
Settings: Community-based sample of family members and individuals with traumatic brain injury.
Participants: Twenty individuals who had participated in the peer support program (11 individuals with TBI and 9 family members).
Main Outcome Measures: Quantitative and qualitative approaches were used: a retrospective structured interview assessing self-reported impacts of peer support on empowerment, quality of life, mood, skills and knowledge, and social supports; an in-depth qualitative interview with a subgroup of family members focused on the specific benefits/limitations of the peer support program.
Results: Participants in the peer support program reported positive impacts of peer support on increasing their knowledge of TBI, enhancing their overall quality of life, improving their general outlook, and enhancing their ability to cope with depression post TBI. The peer support program was reported to have had a minimal impact on enhancing social support from families, friends, and the community, with varying impacts noted on levels of happiness, coping with anger and anxiety, communication with professionals, and control over one's life. Qualitative analysis suggests the merits of this type of community-based support and areas of improvement for the peer support program itself.
Conclusions: Preliminary data suggest that peer support is a promising approach to enhancing coping for both individuals and their family members after TBI.
THE CENTERS for Disease Control and Prevention estimate that more than 5 million 1 American individuals with brain injuries live in the community, although some studies suggest that this may be a significant underestimate. 2 They and their family members must face the long-term consequences of traumatic brain injury (TBI). Many of these individuals receive minimal information about the long-term challenges of TBI, its impact on the family system, and/or information about community-based resources available to assist with maximal adjustment. These individuals often remain socially isolated from other individuals or family members who have successfully adjusted to these often dramatic changes in day-to-day life secondary to TBI—individuals with TBI and their families who could serve as potential sources of mutual support, education, and information.
The lasting toll of TBI has been well documented. 3–7 In addition to cognitive and physical sequelae, individuals with TBI often experience significant depression, anxiety, and reduced quality of life. 5,8–12 The toll on family members of individuals with TBI is also significant, and many family members experience significant emotional distress. 13–20 Ongoing tensions within the family system often result in increased likelihood of breakdown in marital relationships, decreased social contacts, increasing financial strain, altered or reduced job responsibilities, reduced free time, and reduced personal health for family members. 9,19,21,22
Issues related to successful and unsuccessful coping in individuals with TBI and their family members have been explored in prior research. Successful family coping during the early adjustment period has been associated with obtaining adequate social support and information, involvement in work, attending support groups, use of religion, and involvement in recreation. 23,24 In the later stages of adjustment, strategies that individuals with TBI and their families found useful included maintaining a healthy outlook, participating in a support group, seeking respite, and obtaining information about the long-term consequences of TBI, especially the behavioral and emotional disturbances that may occur. 25–27 Such research sheds light on the interventions that may best facilitate successful coping and long-term adjustment for both individuals with TBI and their families.
The findings reported previously, and the beneficial effects of adequate social support and information in particular, suggest that community-based peer support programs for individuals with TBI and their family members could be a key component of community-based interventions designed to maximize adjustment post TBI. Peer support has been found to be an effective intervention for individuals and family members when faced with other medical illnesses. More specifically, peer support programs have been shown to provide powerful stress-buffering influences for individuals facing medical crises, with the effect of such interventions generally greater than that attributed to formal support services. 28 In addition, peer support programs have been found to have a positive impact on personal sense of empowerment (ie, helping an individual regain a feeling of mastery over his or her family member's medical situation, the environment, and his or her life) and self-efficacy (ie, enhancing the individual's perceptions of his or her capabilities for handling situations). 29–30
Although support groups for individuals with TBI exist across the country, more individualized peer support after TBI may be potentially beneficial. To date, peer support programs for individuals and families post TBI have been implemented but not evaluated in a systematic fashion. To address this need, a peer-to-peer support program, referred to henceforth as the TBI Mentoring Partnership Program (TBI-MPP), was implemented to address the community support needs of individuals with TBI and their families. To explore the initial impact of the TBI-MPP and develop an empirical basis for the program's evaluation, two pilot studies were implemented: one involved quantitative analysis, and the second involved qualitative analysis. This article presents the findings from these pilot studies.
With the aim of increasing the validity of research findings and empowering consumers, a paradigm of participatory action research (PAR) 31–34 was incorporated into all aspects of the TBI-MPP. Strengths of PAR include the innovative adaptation of methods for use in a variety of different contexts, exploration of the knowledge and perceptions of community members, involving members of the community as active participants, and facilitating the equitable distribution of power in the process of research so that community members are regarded by themselves and others as being capable of examining and analyzing their own circumstances. 35 In keeping with a PAR model, individuals with TBI and family members were included in the development of the peer training program, the recruitment of individuals into the program, the implementation of support partnerships, the evaluation of program research methods, and the collection and analysis of data obtained from the program itself.
* Department of Rehabilitation Medicine, Mount Sinai School of Medicine, New York, New York.
† Brain Injury Association of New York State, Albany, New York.
‡ National Self Help Clearing House, New York, New York.
Address correspondence and reprint requests to: Mary Hibbard, PhD, Department of Rehabilitation Medicine, Box 1240, Mount Sinai School of Medicine, One Gustave L. Levy Place, New York, NY 10029. Telephone: 212-659-9374. Fax: 212-348-5901. E-mail: firstname.lastname@example.org.
The preparation of this article was supported by Grant #H133B30038 from the National Institute of Disability and Rehabilitation Research, US Department of Education, to the Mount Sinai Medical Center, Wayne Gordon, PhD, Project Director.