Broadening the Scope of Community Participation in Traumatic Brain Injury Research

Community participation has traditionally been conceptualized as the frequency or difficulty of engagement in community activities. However, qualitative studies reveal that people with disabilities define community participation by the degree to which they feel included in society. This sense of “enfranchisement” is not well-represented among conceptualizations of community participation in rehabilitation research. That said, some suggest that enfranchisement may be a promising intervention target as a means of improving community participation. Community participation is problematic following traumatic brain injury (TBI), and optimal interventions for and measurement of community participation are unclear. We need to specify which intervention elements show promise for restoring community participation. We also need an interpretable outcome measure of enfranchisement. This dissertation examined interventions associated with improved community participation outcomes, as they are currently measured, and examined the psychometric properties of the Enfranchisement Scale of the Community Participation Indicators (CPI), as a promising new measure. First, we conducted a scoping review of interventions that address community participation outcomes after brain injury. We found that studied interventions focused more on the performance of community activities, rather than the enfranchisement, per se. Daily life skills interventions and metacognitive interventions showed the greatest promise for improving performance of home and community activities, highlighting the importance of focusing on personally meaningful activities rather than injury-related impairments. Second, we examined existing and prospectively collected data to assess construct validity, cut points, and sensitivity to change of the CPI. We found that enfranchisement is strongly correlated with participation, environment, and depression; and weakly correlated with physical and cognitive impairments. Thus, interventions focused on environmental barriers and mood symptoms may be important for improving enfranchisement. We also found that the CPI had similar sensitivity to change as the Community Integration Questionnaire, the gold standard for assessing performance of community participation activities. Overall, these findings suggest new directions for intervention research in TBI rehabilitation by identifying potential intervention elements (i.e., meaningful activities, environmental modifications, mood management) and new target outcomes (e.g., enfranchisement) as a means of improving community participation. These results will guide intervention development to address enfranchisement and assess intervention-related changes over time