Sander, Angelle M. PhD; Struchen, Margaret A. PhD
Associate Professor, Department of Physical Medicine and Rehabilitation, Baylor College of Medicine & Harris County, Hospital District, Director & Senior Scientist, TIRR Memorial Hermann's Brain, Injury Research Center (Sander)
Assistant Professor, Department of Physical Medicine and Rehabilitation, Baylor College of Medicine (Struchen)
SOCIAL ISOLATION is perhaps the most profound life change for persons with traumatic brain injury (TBI). A decrease in the number and depth of social relationships over time has been documented by researchers as a long-term problem for persons with TBI.1–5 There has been evidence of deterioration in the ability to maintain preinjury marital relationships,6 friendships,4,5,7,8 as well as in the ability to form new social relationships.9 Difficulties with social networking have been noted by persons with injury as one of the most important areas of community participation that is impacted after TBI.10,11
In spite of the obvious importance of social relationships for overall well-being and quality of life, there is a disproportionately low amount of rehabilitation research that focuses on predictors of social outcomes relative to that devoted to productivity outcomes (such as work and school). Similarly, there has been minimal research evaluating treatments that are specifically targeted toward improving social relationship outcomes for persons with TBI. In 2003, TIRR was awarded a Rehabilitation Research and Training Center (RRTC) grant on Community Integration in Individuals with TBI (grant H133B021117) from the National Institute on Rehabilitation and Research, US Department of Education. Among the primary goals of the RRTC were to increase understanding of the problems with social relationships faced by persons with TBI and to develop and evaluate interventions that would result in improved social integration. It was hoped that the RRTC projects would yield data that would fill a gap in the existing research and clinical realms. Three of the articles in the current issue (2 by Struchen et al and 1 by Gill et al) are the culmination of the work conducted with our RRTC funding. The remaining 3 articles were written by colleagues who share the view that improving the capacity of persons with TBI to maintain existing relationships and to form new ones is an important goal for rehabilitation professionals. Collectively, the articles in this issue make a solid contribution toward reaching this goal.
The lead article in this issue is by Struchen and colleagues and describes a randomized controlled trial evaluating a peer mentor intervention aimed at improving social integration for persons with TBI. The intervention described here is unique in that improving social networking was its primary outcome goal, and mentors were screened for adequate social integration before matching them with mentees. While the sample size did not allow for adequate evaluation of differences between the treatment group and the control group on formal measures of social integration, there were small positive changes noted for mentored persons in the areas of social network size, participation in highly valued activities, and activities involving persons other than family. There was also high satisfaction with the program for both mentors and their peer partners. The implementation of this study was extremely challenging, and the lessons learned can serve as a guide for future studies of this type of intervention. The study also yielded a training manual for social peer mentors, which can be used by consumer groups and rehabilitation programs wishing to implement a similar program.
Two of the articles in this issue investigated the role of social factors in predicting outcomes for persons with TBI. Vangel and colleagues investigated the role of family functioning and caregiver characteristics, including social support, in predicting the well-being of persons with TBI. The results showed that caregivers’ social support and family behavioral control were associated with life satisfaction for persons with injury. Similarly, caregivers’ life satisfaction and family behavioral control were predictive of emotional well-being for the person with injury. This is one of the first studies to show that social relationships, including caregivers’ social support and family characteristics, can contribute to outcomes for persons with injury, even after accounting for age, education, injury severity, and cognitive functioning. In the second article, by Struchen and colleagues, the ability of social communication skills and behavioral functioning to predict social integration was investigated. The method used was unique in that it included a measure of interpersonal problem-solving in which persons with injury verbalized and then role played how they would handle interpersonal problem situations. The results revealed that interpersonal problem-solving, perceived social communication ability, and perceived affective/behavioral problems were predictive of social integration, after controlling for demographic and injury-related variables. Taken together, these 2 studies provide evidence that social relationships (social support and family functioning) and social communication abilities impact outcomes for persons with TBI. These areas should be targeted for interventions.
The final 3 articles relate to the impact of TBI on intimate relationships. The first of these, by Godwin et al, is a review of the literature regarding the effect of TBI on marital relationships. The authors make a cogent argument that the existing literature on marital relationships following TBI is not rooted in theory and is biased by including primarily the perspectives of spouses or significant others. The authors propose the use of a marriage and family therapy framework to understand relationship changes following TBI. Specifically, they propose the use of a social constructivist paradigm, where relationships are conceptualized as a result of perceived reality within the social interchange between 2 people. Inclusion of the perspectives of both partners within a relationship is crucial for this paradigm. The framework proposed by Godwin and colleagues has great potential for application to the study of intimate relationships following TBI. The article in this issue by Gill et al also highlights the importance of including the views of both partners in a relationship. In this qualitative exploration of intimacy from the viewpoints of persons with TBI and their partners, Gill and colleagues reported that the experiences of persons with TBI and their partners regarding the relationship were often different, and that the consideration of both is necessary to fully understand the relationship. The Gill et al study also emphasizes that both persons with TBI and their partners perceived many positive relationship changes in addition to the more difficult ones. By making use of questionnaires that pull for relationship distress and/or negative changes after TBI, traditional studies of relationship changes may have failed to provide a comprehensive picture of the reality for a couple following TBI.
The final article, by Hammond and colleagues, describes the results of focus groups held with the spouses of persons with TBI. The strength of this study lies in its qualitative analysis and in its explanation of findings within the framework of Gottman's theory of marital evolution. The authors note that the perceptions of spouses regarding the quality of their marriages after TBI were affected by the preinjury relationship. Their findings also indicate that the relationships evolve over time, and that attempting to define the relationship by assessing it at one point in time is problematic. Many of the spouses in the sample of Hammond et al described a process of acceptance of even negative TBI-related changes that allowed them to remain in the relationship. While the study was biased by not including the viewpoints of persons with TBI, the findings indicate the potential usefulness of Gottman's theory for future studies that involve persons with TBI and their intimate partners.
Taken together, the work highlighted in this issue offers a solid grounding for development of interventions to improve the ability of persons with TBI to form and maintain social relationships. We hope that more researchers will devote efforts toward this topic that is so important for the quality of life of persons with TBI.
—Angelle M. Sander, PhD
Department of Physical Medicine and Rehabilitation
Baylor College of Medicine & Harris County
Director & Senior Scientist
TIRR Memorial Hermann's Brain
Injury Research Center
—Margaret A. Struchen, PhD
Department of Physical Medicine and Rehabilitation
Baylor College of Medicine
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