Abstract
Objective: To investigate personal beliefs about seeking social support following traumatic brain injury (TBI) and the relationship of these appraisals to demographic and injury variables, social integration, and quality of life ratings.
Setting: The central region of a Midwest state.
Participants: Fifty-six adults with TBI who were more than 6 months postinjury and living in the community.
Main outcome measures: The Hesitation Scale, a 20-item survey that assesses reasons that people might hesitate to reach out to others in the community, and portions of the Living Life After Traumatic Brain Injury Scale.
Results: Negative attitudes and beliefs about seeking social support were significantly related to lower perceptions of social support, lower ratings of quality of life, longer time since injury, being divorced or separated, and living in an urban area. Predictors of higher quality of life ratings included more positive appraisals about seeking social support, living in a rural area, and the ability to engage in productive activity.
Conclusions: Positive outcomes after TBI appear to be moderated by living in a rural area, which is associated with more openness to seeking social supports and contributes to better quality of life.
PEOPLE WITH traumatic brain injury (TBI) often experience the onset of significant social isolation within the first 2 years after injury. 1-4 Social support networks decrease in size and become more dense as individuals with TBI lose friendships and become more dependent on family members for emotional and instrumental support. 5 Often, there is a decrease in perceived quality of life that is associated with unmet needs for social contacts, close friendships, and intimate relationships. 6,7
Researchers have linked the onset of social interaction problems to injury-related changes in cognitive and behavioral competencies. 8,9 For example, functional communication skills often are impaired after TBI, with particular weaknesses noted in discourse and pragmatics. 10-14 Thus people with TBI may have difficulty interacting because they provide insufficient information for message clarity, repeat themselves or require repetition from the communication partner, respond slowly or do not acknowledge the speaker, and have difficulty with topic maintenance. Other cognitive deficits that may contribute to problems with social relationships include weaknesses in memory, 15 speed of processing and executive control, 14,16 social problem solving, 17 and comprehension of social cues. 18
In addition to changes in cognitive-communicative skills, people with TBI often experience personality changes and difficulties with behavioral regulation, such as poor anger control, reduced initiation or apathy, childishness, decreased self-awareness, and suspiciousness or paranoid ideation. 2,8,12 These behaviors are hypothesized to interfere with social relationships by making social exchanges with individuals with TBI less reinforcing. 12-14 A recent study by Johnson and Davis 15 illustrated the impact of cognitive and behavioral problems on social interactions. The researchers set up structured opportunities for social contacts for people with TBI living in the community, but found that participants had difficulty recalling planned activities, initiating additional contacts on their own, and providing positive feedback to their social partners.
Although much of the research on social integration after TBI has focused on the contribution of neurologically based problems that decrease social interaction skills, there has also been a body of work that examines the relationship between coping with injury-related changes and social impairment. 9,19-23 In their review, Morton and Wehman 9 concluded that anxiety and depression can be persistent problems among people with more severe TBI and that emotional distress may be associated with a decrease in leisure activities and social contacts. To illustrate, a longitudinal study of 66 people with TBI at the University of Iowa 19,20 found a strong relationship between major depression and poor social functioning at 1 year after injury, but no consistent relationship between depression and either physical or cognitive deficits. This study also showed that depression at the acute stage of injury was related to fears about changes in vocational functioning, but the onset of depression at 6 months after injury or later was related to perceived deterioration in interpersonal relationships.
Moore and Stambrook 22 proposed a model for understanding long-term social and emotional outcomes after TBI based on theories developed by cognitive-behavioral therapists. 24-26 Although they acknowledged that injury-related changes in cognitive and behavioral functioning may result in the disturbance of social networks, they posited that these disturbances may be perpetuated over time by a sense of learned helplessness and other maladaptive cognitive beliefs and attitudes. Such maladaptive cognitive appraisals may create barriers to positive change, contribute to a downward spiral of inaction, exacerbate emotional distress and social isolation, and reduce quality of life.
The purpose of the current study is to examine attitudes and beliefs about seeking social support among individuals who are more than 6 months post-TBI and living in the community. Participants in the study were enrolled in the Community Link Project, a research demonstration project designed to help individuals with TBI increase natural, unpaid social supports in their community and decrease social isolation. During the early development of this project, we found that people with TBI demonstrated reluctance to seek out social supports for a variety of reasons. Based on our pilot contacts with consumers, we developed a 20-item questionnaire, the Hesitation Scale, to measure the cognitive appraisals that seemed to limit the participants' ability to reach out to other people for informal support. This article describes our findings on the Hesitation Scale and investigates the relationship between these attitudes and beliefs, ratings of perceived social support, level of community integration, and quality of life. Our hypothesis was that people with more negative cognitive appraisals about reaching out to others would be less likely to feel supported, to be engaged in community activities, and to indicate satisfactory quality of life. In addition, we planned to explore responses on this scale in relation to a number of potential moderating variables, including injury status (e.g., severity, chronicity), personal characteristics (e.g., marital status, substance use), and community setting (e.g., rural versus urban).