Building Research Capacity to Enroll Spanish-Speaking Patients and Families in a Traumatic Brain Injury Transitional Care Intervention

Abstract

Background:

The Hispanic or Latino community account for under 8% of US clinical trial samples. Research is needed to facilitate increased enrollment of Hispanic or Latino individuals into trials.

Objectives:

The purpose of this study was to describe cultural and linguistic adaptation of the BETTER traumatic brain injury (TBI) transitional care intervention and accompanying participant workbook to be suitable for Spanish-speaking patients with TBI and their families.

Methods:

Building on intervention development with Spanish-speaking patients and families, the cultural adaptation (phase I) included incorporating perspectives from qualitative interviews of interpreters and providers on the overall intervention. Rapid qualitative analysis was employed in phase I, allowing for efficient implementation of cultural adaptation findings in the BETTER clinical trial. Linguistic adaptation (phase II) included workbook translation, cognitive user-testing, and participant feedback.

Results:

Health care providers and interpreters (n = 10, phase I) and one workbook reviewer (phase II) participated. Participants’ mean age was 45.5 years, majority were female (n = 8), and all were bilingual. Phase I analysis produced 2 themes: (1) centering culture to advance patient outcomes, and (2) enhancing uptake of BETTER. The main recommendations received in phase II were related to orthographic changes (25%) and limiting use of English idioms (19%), which did not hold meaning in the Spanish language.

Conclusion:

Study findings supported cultural and linguistic adaptation of BETTER and the accompanying participant workbook. Steps taken in this study can serve as a model for researchers seeking to culturally and linguistically adapt interventions to engage non-English speaking and minoritized participants in research.