"If you respect me, you are respecting my culture": methods and recommendations for personalizing a TBI transitional care intervention.

OBJECTIVE

Despite research, national legislation, and clinical guidelines supporting transitional care, there is minimal benefit from existing transitional care interventions for racial/ethnic minorities with traumatic brain injury (TBI) discharged home from acute hospital care. Existing TBI transitional care interventions are not tailored to address the needs/preferences of patients from various racial/ethnic minority groups. The purpose of this study was to describe use of personalization to tailor a TBI transitional care intervention for various racial/ethnic groups.

DESIGN

Following preliminary intervention manual development, a qualitative descriptive study was conducted using eight focus groups with 40 English-and Spanish-speaking participants (12 patients, 12 caregivers, and 16 providers).

RESULTS

Three personalization-related themes emerged: 1) what is important to me, 2) finding someone to deliver the intervention who can adapt to my needs, and 3) respect over culture. Findings informed personalization strategies within our final manual.

CONCLUSIONS

We recommend researchers who wish to use personalization to tailor interventions to consider: 1) allowing stakeholders to dictate what is most important and 2) implementing an iterative intervention development process with input from diverse stakeholders. Findings have implications for informing the development of transitional care interventions to increase the likelihood that interventions are inclusive of needs and preferences of various races/ethnicities.