Who We Are

We are a multidisciplinary, bilingual, and bicultural research group that is evaluating an intervention that helps Hispanic/Latinx families of children hospitalized with a traumatic brain injury (TBI) in Washington, Oregon, Texas, and Colorado. 

What We Do

This 5-year NIH-funded Randomized Control Trial (RCT) tests a bilingual intervention consisting of 3 months of TBI education and outpatient navigation for Hispanic/Latinx families. We aim to understand if the intervention results in timely initiation and better long-term access to rehabilitation when compared to families who receive follow up as usual. It also tests if children randomized to the intervention have lower disability after injury. Parents play a significant role in their child’s recovery. However, Hispanic parents face substantial barriers that can result in delayed treatment initiation and suboptimal outcomes. 1st BIEN integrates in-person education enriched by video content delivered through mobile phone devices, with outpatient navigation during transitions from inpatient to outpatient care and during school return. 

Why is it Important?

26% of children in the United States are Hispanic/Latinx. It is crucial to understand the need to examine disparities in Traumatic Brain Injury (TBI) among Hispanic/Latinx children. Hispanic children experience more severe injuries and have larger post-injury disparities compared to non-Hispanic White (NHW) children including quality of life, communication skills, self-care activities, and participation in social activities. The 1st-BIEN study aims to support parents accessing services in the community including rehabilitation therapies and school resources, which is essential to helping Hispanic/Latinx families of children with TBI.

Prior Work by our research group informs this study:

This study builds upon prior research among Hispanic/Latinx children with TBIs, conducted by the group of investigators in this proposal.

  • A seminal study by Drs. Jimenez (PI) and Rivara documented for the first-time sustained disparities in disability among Hispanic/Latinx children with TBI.  Disparities included lower health-related quality of life, communication, and self-care skills after a TBI among Hispanic/Latinx children when compared to their non-Hispanic White peers. Importantly these differences persisted even after adjusting for known risk factors such as severity of injury, age, insurance and socioeconomic status.
  • Importantly, these disparities do not stem from differences in treatments in acute care. In a subsequent study, of inpatient rehabilitation facilities nationwide, we found no differences in function between Hispanic and Non-Hispanic White children with TBI at discharge. Patients had similar lengths of stay, and equivalent recovery during inpatient rehabilitation.

  • Disparities in care arise after discharge from the hospital. In the outpatient setting, however differences in care arise. Using a national dataset of patients with Medicaid insurance, Dr. Jimenez and Rivara found only 29% of children received outpatient rehabilitation after TBI hospitalization, with larger disparities for receipt of speech therapies for Hispanic children.
  • Availability of rehabilitation services is even lower for Spanish Speaking families.  A study by Drs. Moore and Jimenez (PI) describes fewer providers accepting Medicaid patients and providing interpretation services for non-English speaking families.
  • Hispanic parents faced additional barriers to access care after a TBI. In addition to the described barriers, in a qualitative study Hispanic parents describe additional barriers due to poor communication with clinical and school providers, as well as lack of educational resources to educate themselves about TBI, treatments and supports in the community and school. dues to a deficiency of Spanish resources.
  • Disparities also exist in receipt of school services after a TBI. School support services after a TBI are critical to facilitate school return. Schools not only provide academic opportunities but also play a key role in socialization and mental health of children and adolescents. We documented disparities in receipt of school services for Hispanic/Latinx children. As well, among those who received services their academic performance improved significantly. Hispanic children had higher academic gains compared to non-Hispanic White children.

  • Culturally and linguistically relevant TBI Education and navigation programs facilitate access to care. In a pilot study in Seattle, we successfully provided education tailored to patient’s literacy, using TBI culturally relevant materials, and telephone-based navigation for 3 months after discharge. 100% of participant parents completed the intervention. After intervention, parents reported significant improvement in Caregiver Self Efficacy at 3, 6, and 12, months follow-up times.  Treatment adherence was high; 86% of children received all follow up appointments in time including 85% initial outpatient rehabilitation appointments.

 

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