Internalized Disability Stigma Among People Living With Chronic Traumatic Brain Injury.

Abstract

Objective: Qualitative evidence suggests that disability stigma is an important concept in the lived experiences of individuals with traumatic brain injury (TBI). However, there have been no studies in this population specifically evaluating internalized disability stigma. We sought to characterize variability in levels of internalized stigma and examine the applicability of the "why try" effect (reduced self-efficacy and life goal attainment as consequences of internalized stigma) to people living with chronic TBI.

Setting: Outpatient research laboratory.

Participants: Eighty-four adults with chronic TBI (1.4-22.6 years post-injury).

Design: Cross-sectional observational study.

Main measures: Items were adapted from the Internalized Stigma of Mental Illness questionnaire to capture disability-related internalized stigma and perceived discrimination. Primary outcome measures included societal participation and self-efficacy for TBI symptom management, which were assessed using validated instruments (Participation Assessment with Recombined Tools-Objective and TBI Self-Efficacy Scale, respectively).

Results: Raw and residualized (adjusted for perceived discrimination) internalized stigma scores were normally distributed. Individuals who reported internalized stigma at levels greater than predicted by their perceived discrimination tended to have more recent injuries (d = .60) and poorer processing speed (d = .50) compared to those reporting relatively lower internalized stigma. Higher internalized stigma was associated with lower self-efficacy, which, in turn, was associated with lower societal participation (indirect effect = - .26, 95% CI = [-.50, - .09]), independent of mental health symptoms.

Conclusions: Findings provide preliminary support for clinically meaningful variability in internalized stigma among people with TBI, and for the applicability of the "why try" model to this population. Further theory-informed research could stimulate the development of behavioral health interventions for reducing stigma internalization and its harmful effects on post-injury psychosocial functioning.