Developing multidimensional participation profiles after traumatic brain injury: a TBI model systems study

Abstract

Purpose. To characterize societal participation profiles after moderate-severe traumatic brain injury (TBI) along objective (Frequency) and subjective (Satisfaction, Importance, Enfranchisement) dimensions.

Materials and Methods. We conducted secondary analyses of a TBI Model Systems sub-study (N = 408). Multiaxial assessment of participation included the Participation Assessment with Recombined Tools-Objective and -Subjective questionnaires (Participation Frequency and Importance/Satisfaction, respectively) and the Enfranchisement Scale. Participants provided responses via telephone interview 1–15 years post-injury. Multidimensional participation profiles (classes) were extracted using latent profile analysis.

Results. A 4-class solution was identified as providing maximal statistical separation between profiles and being clinically meaningful based on profile demographic features. One profile group (48.5% of the sample) exhibited the “best” participation profile (High Frequency, Satisfaction, Importance, and Enfranchisement) and was also the most advantaged according to socioeconomic indicators. Other profile groups showed appreciable heterogeneity across participation dimensions. Age, race/ethnicity, education level, ability to drive, and urbanicity were features that varied between profiles.

Conclusions. Societal participation is a critical, but inherently complex, TBI outcome that may not be adequately captured by a single index. Our data underscore the importance of a multidimensional approach to participation assessment and interpretation using profiles. The use of participation profiles may promote precision health interventions for community integration.

Implications for Rehabilitation

• Our study found unidimensional measures of societal participation in traumatic brain injury (TBI) populations that focus exclusively on frequency indicators may be overly simplistic and miss key subjective components of participation

• Taking a multidimensional perspective, we documented four meaningfully distinct participation subgroups (including both objective and subjective dimensions of societal participation) within the TBI rehabilitation population

• Multidimensional profiles of participation may be used to group individuals with TBI into target groups for intervention (e.g., deeper goal assessment for individuals who do not rate standard participation activities as important, but also do not participate and do not feel enfranchised).

Keywords:

• Community participation
• social participation
• personal satisfaction
• traumatic brain injuries
• community integration
• latent class analysis

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

The TBI Model Systems National Data and Statistical Center [35] has a standard operating procedure (SOP) for obtaining a copy of the dataset, available with additional instructions at this website: https://www.tbindsc.org/Researchers.aspx

Additional information

Funding

The contents of this manuscript were developed under grants from the National Institute on Disability, Independent Living, and Rehabilitation Research [NIDILRR grant numbers 90DP0038, 90DPTB0004, 90DPTB0005, 90DPTB0007, 90DPTB0009, 90DPTB0011, 90DPTB0016, 90DPTB0018, 90DPTB0025]. NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). The contents of this manuscript do not necessarily represent the policy of NIDILRR, ACL, HHS, and there was no ndorsement by the Federal Government.