Challenges in the Transition from Acute Hospital Care to Home for Spanish-Speaking Latino Patients with TBI and Families: Perspectives of Healthcare Providers and Interpreters.

Language-based disparities negatively impact patient outcomes. Spanish-speaking Latino patients with traumatic brain injury (TBI) transitioning home from acute hospital care and their families have poor TBI-related outcomes; further, they have significant difficulties navigating the healthcare system due to care fragmentation and limited provider support. These challenges are exacerbated by language barriers. There are disproportionately fewer bilingual providers and interpreters in the U.S. healthcare system for patients with TBI for whom English is not their primary language. Although Spanish-speaking Latino patients with TBI and their families communicate with healthcare providers using interpreters on a regular basis, limited research has explored the healthcare delivery perspective. The purpose of this study was to understand the perspectives of healthcare providers and interpreters regarding their experience caring for or supporting Spanish-speaking Latino patients with TBI and their families during the transition home from acute hospital care. This qualitative descriptive study included 10 bilingual (English and Spanish-speaking) participants: 7 interdisciplinary providers and 3 interpreters; findings were analyzed using rapid qualitative analysis to inform intervention adaptation. Four themes were identified: 1) language misalignment decreases health literacy and increases length of stay; 2) TBI-related cognitive impairments, coupled with language differences, make communication challenging; 3) unique social contributors to health directly decrease health equity; and 4) recommendations to improve access and justice in transitional care. There are multiple opportunities to improve transitional care support provided to Spanish-speaking Latino patients with TBI and their families in a manner that is not currently being addressed in research or in practice.

Feasibility of BrainSTORM, a Traumatic Brain Injury Transitional Care Intervention.

OBJECTIVE: To investigate the feasibility, acceptability, and clinical outcome measures of a transitional care intervention for patients with traumatic brain injury (TBI) and their family caregivers. SETTING: Inpatient and outpatient rehabilitation at a level I trauma center in the Southeastern United States. PARTICIPANTS: Patients (ages 18-75) diagnosed with moderate to severe TBI, receiving rehabilitation, and their family caregivers. DESIGN: Quasi-experimental, single-arm, single-center feasibility study with pre- and post-test design. Participants completed a 4-month transitional care program involving monthly education and social support. MAIN MEASURES: Feasibility of enrollment, data collection, intervention completion rates, and intervention acceptability. Clinical outcome measures included patient quality of life (QOL) (12-Item Short Form Health Survey (SF-12), primary outcome) and patient and caregiver self-efficacy (Self-Efficacy for Management of Chronic Conditions Scale). RESULTS: Eleven dyads and 1 monad enrolled (N = 23, 12 patients, 11 caregivers). All completed baseline data; 91.3% (n = 21, 11 patients, 10 caregivers) completed 2-month (intervention midpoint) data; and 86% (n = 20, 11 patients, 9 caregivers) completed 4-month (intervention endpoint) data. The intervention completion rate was 91.67%. Participants engaged in a mean of 2.17 (SD = 1.34) monthly educational webinars and 2.42 (SD = 1.51) social support groups during the intervention period. Approximately 70% of participants (n = 16, 9 patients, 7 caregivers) completed acceptability data, indicating positive intervention experiences (patients: mean 9.44/10 [SD = 1.01]; caregivers: mean 9.57/10 [SD = 0.79]). Patient QOL scores did not statistically improve over time; however, patient self-efficacy scores did statistically significantly improve from baseline (mean = 7.03, SD = 1.53; P = .0197) to intervention end point (4 months) (mean = 8.35, SD = 1.71). CONCLUSION: Brain Injury Support To Optimize Recovering Minds (BrainSTORM) is a promising new TBI transitional care intervention that has potential to enhance care standards for patients with TBI and their family caregivers. Further research is needed to determine its efficacy.

Transition of Intensive Care Unit Patients and Their Families to Home After Acute Hospital Care.

Patients in the intensive care unit (ICU) increasingly are expected to eventually return home after acute hospital care. Yet transitional care for ICU patients and their families is often delayed until the patient is about to be transferred to another location or level of care. Transitions theory is a middle-range nursing theory that aims to provide guidance for safe and effective nursing care and research while an individual experiences a transition. Intensive care unit nurses are well positioned to provide ICU transitional care planning early. This article applies the transitions theory as a theoretical model to guide the study of the transition to home after acute hospital care for ICU patients and their families. This theory application can help ICU nurses provide holistic patient- and family-centered transitional care to achieve optimal outcomes by addressing the predischarge and postdischarge needs of patients and families.

Efficacy of BETTER transitional care intervention for diverse patients with traumatic brain injury and their families: Study protocol of a randomized controlled trial.

OBJECTIVE: The purpose of this study is to examine the efficacy of BETTER (Brain Injury, Education, Training, and Therapy to Enhance Recovery) vs. usual transitional care management among diverse adults with traumatic brain injury (TBI) discharged home from acute hospital care and families. METHODS: This will be a single-site, two-arm, randomized controlled trial (N = 436 people, 218 patient/family dyads, 109 dyads per arm) of BETTER, a culturally- and linguistically-tailored, patient- and family-centered, TBI transitional care intervention for adult patients with TBI and families. Skilled clinical interventionists will follow a manualized protocol to address patient/family needs. The interventionists will co-establish goals with participants; coordinate post-hospital care, services, and resources; and provide patient/family education and training on self- and family-management and coping skills for 16 weeks following hospital discharge. English- and Spanish-speaking adult patients with mild-to-severe TBI who are discharged directly home from the hospital without inpatient rehabilitation or transfer to other settings (community discharge) and associated family caregivers are eligible and will be randomized to treatment or usual transitional care management. We will use intention-to-treat analysis to determine if patients receiving BETTER have a higher quality of life (primary outcome, SF-36) at 16-weeks post-hospital discharge than those receiving usual transitional care management. We will conduct a descriptive, qualitative study with 45 dyads randomized to BETTER, using semi-structured interviews, to capture perspectives on barriers and facilitators to participation. Data will be analyzed using conventional content analysis. Finally, we will conduct a cost/budget impact analysis, evaluating differences in intervention costs and healthcare costs by arm. DISCUSSION: Findings will guide our team in designing a future, multi-site trial to disseminate and implement BETTER into clinical practice to enhance the standard of care for adults with TBI and families. The new knowledge generated will drive advancements in health equity among diverse adults with TBI and families. TRIAL REGISTRATION: NCT05929833.

Racial Differences in Shared Decision-Making About Critical Illness.

Importance: Shared decision-making is the preferred method for evaluating complex tradeoffs in the care of patients with critical illness. However, it remains unknown whether critical care clinicians engage diverse patients and caregivers equitably in shared decision-making. Objective: To compare critical care clinicians' approaches to shared decision-making in recorded conversations with Black and White caregivers of patients with critical illness. Design, Setting, and Participants: This thematic analysis consisted of unstructured clinician-caregiver meetings audio-recorded during a randomized clinical trial of a decision aid about prolonged mechanical ventilation at 13 intensive care units in the US. Participants in meetings included critical care clinicians and Black or White caregivers of patients who underwent mechanical ventilation. The codebook included components of shared decision-making and known mechanisms of racial disparities in clinical communication. Analysts were blinded to caregiver race during coding. Patterns within and across racial groups were evaluated to identify themes. Data analysis was conducted between August 2021 and April 2023. Main Outcomes and Measures: The main outcomes were themes describing clinician behaviors varying by self-reported race of the caregivers. Results: The overall sample comprised 20 Black and 19 White caregivers for a total of 39 audio-recorded meetings with clinicians. The duration of meetings was similar for both Black and White caregivers (mean [SD], 23.9 [13.7] minutes vs 22.1 [11.2] minutes, respectively). Both Black and White caregivers were generally middle-aged (mean [SD] age, 47.6 [9.9] years vs 51.9 [8.8] years, respectively), female (15 [75.0%] vs 14 [73.7%], respectively), and possessed a high level of self-assessed health literacy, which was scored from 3 to 15 with lower scores indicating increasing health literacy (mean [SD], 5.8 [2.3] vs 5.3 [2.0], respectively). Clinicians conducting meetings with Black and White caregivers were generally young (mean [SD] age, 38.8 [6.6] years vs 37.9 [8.2] years, respectively), male (13 [72.2%] vs 12 [70.6%], respectively), and White (14 [77.8%] vs 17 [100%], respectively). Four variations in clinicians' shared decision-making behaviors by caregiver race were identified: (1) providing limited emotional support for Black caregivers, (2) failing to acknowledge trust and gratitude expressed by Black caregivers, (3) sharing limited medical information with Black caregivers, and (4) challenging Black caregivers' preferences for restorative care. These themes encompass both relational and informational aspects of shared decision-making. Conclusions and Relevance: The results of this thematic analysis showed that critical care clinicians missed opportunities to acknowledge emotions and value the knowledge of Black caregivers compared with White caregivers. These findings may inform future clinician-level interventions aimed at promoting equitable shared decision-making.

The BETTER Traumatic Brain Injury Transitional Care Intervention: A Feasibility Study.

This study aimed to investigate the feasibility, acceptability, and clinical outcome measures of BETTER (Brain Injury Education, Training, and Therapy to Enhance Recovery), a culturally tailored traumatic brain injury (TBI) transitional care intervention, among diverse younger adult patients with TBI (age 18-64) and their caregivers. Trained clinical interventionists addressed patient/family needs; established goals; coordinated post-hospital care and resources; and provided patient/family training on self- and family-management coping skills. Fifteen dyads enrolled (N = 31, 15 patients, 16 caregivers). All completed baseline data; 74.2% (n = 23; 10 patients, 13 caregivers) completed 8-week data; 83.8% (n = 26; 13 each) completed 16-week data. Approximately 38% (n = 12, 3 patients, 9 caregivers) completed acceptability data, showing positive experiences (mean = 9.25, range 0-10; SD = 2.01). Overall and mental quality of life (QOL) scores did not differ over time but physical QOL scores did improve over time (baseline: 30.3, 8 weeks: 46.5, 16 weeks: 61.6; p = 0.0056), which was considered to be a suitable outcome measure for a future trial. BETTER is a promising intervention with implications to improve TBI care standards. Research is needed to determine efficacy in a randomized trial.

How Subjective and Objective Factors in Research and Practice May Perpetuate Health Disparities Among Patients With Traumatic Brain Injury.

ABSTRACT: Research shows disparities exist in traumatic brain injury (TBI)-related outcomes and are associated with objective and subjective factors. Objective factors (e.g., age, sex, race/ethnicity, health insurance status, and socioeconomic status) are defined as variables that are frequently measured, not easily modifiable, and not easily influenced by individual perceptions, opinions, or experiences. Conversely, subjective factors (e.g., personal health literacy, cultural competence, patient/family-clinician communication, implicit bias, and trust) are defined as variables that may be less frequently measured, more easily modifiable, and more easily influenced by individual perceptions, opinions, or experiences. The purpose of this analysis and perspective is to provide recommendations for further examination of subjective factors within TBI research and practice, with the overarching goal of reducing TBI-related disparities. Establishing reliable and valid measures of subjective factors is recommended to allow for further examination of the influence of both objective factors and subjective factors in the TBI population. Providers and researchers must also engage in education and training to recognize their biases and how bias influences decision making. The influence of subjective factors in practice and research must also be considered to ensure that knowledge needed to advance health equity is generated and disparities in outcomes for patients with TBI are reduced.

Design, methods, and baseline characteristics of the Brain Injury Education, Training, and Therapy to Enhance Recovery (BETTER) feasibility study: a transitional care intervention for younger adult patients with traumatic brain injury and caregivers.

OBJECTIVES: We developed a patient- and family-centered traumatic brain injury (TBI) transitional care intervention, called BETTER (Brain Injury Education, Training, and Therapy to Enhance Recovery), to improve quality of life (via SF-36) of younger TBI patients of different racial groups discharged home from acute hospital care and caregivers. We describe our design, methods, and baseline characteristics for our feasibility study. METHODS: We co-developed BETTER with input from key stakeholders (TBI patients and caregivers, healthcare providers, and interdisciplinary research team members). BETTER is guided by the Individual and Family Self-Management Theory, our team's prior research, as well as literature used to support, educate, and train patients and families recovering from TBI and other conditions. The intervention is delivered by trained clinical interventionists (transitional care managers), beginning 24-72 h pre-discharge to 16 weeks post-discharge. BETTER offers tailored transitional care support to patient/family dyads, including assessing needs; establishing goals; coordinating post-hospital care, services, and resources; and providing patient/family education and training on brain injury coping skills. The majority of the intervention is delivered remotely via phone and remote video conferencing platform (Clinicaltrials.gov: NCT04584554). RESULTS: We enrolled 15 dyads (N = 31, 15 patients, 16 caregivers) in this single arm, single center feasibility study. Most patients were men (n = 11, 73.33%), had a mean age of 39.07 (SD: 15.15), and were Black (n = 9, 60%), White (n = 5, 33.3%), or American Indian (n = 1, 0.66%). Injury severities were mild (n = 6, 40%), moderate (n = 4, 26.6%) or severe (n = 5, 33.33%). Most patients were insured (n = 10; 66.7%), had a high school education (n = 6; 40%); and earned $30,000 or less per year (n = 11; 73.3%). Most caregivers were married (n = 9, 56.25%) women (n = 14, 87.5%) with a mean age of 43.38 (SD: 10.45) and were Black (n = 8, 50%), White (n = 7, 43.75%), or American Indian (n = 1, 0.62%). Most caregivers identified as the spouse (n = 7; 43.75%) or parent (n = 6; 37.5%) of the patient. CONCLUSIONS: BETTER is among the first TBI transitional care intervention to address needs/preferences for younger TBI patients of different racial groups after discharge home from acute hospital care and families. Findings can be used to inform future work.