Communicating With Spanish-Speaking Families of Hospitalized Children With Medical Complexity.

BACKGROUND AND OBJECTIVES: Hospitalized families who use languages other than English (LOE) for care encounter unique communication challenges, as do children with medical complexity (CMC). We sought to better understand communication challenges and opportunities to improve care of families who use LOE from the perspectives of hospital staff and Spanish-speaking parents of CMC. METHODS: This qualitative project involved secondary analysis of transcripts from a study on family safety reporting at 2 quaternary care children's hospitals and additional primary data collection (interviews) of staff and parents. Bilingual researchers conducted audio-recorded, semistructured interviews with staff and Spanish-speaking parents of CMC during/after hospitalization. We professionally transcribed and translated interviews and developed, iteratively refined, and validated a codebook. Three independent researchers coded interviews using qualitative descriptive methodology and identified emerging themes through thematic analysis. RESULTS: We coded 49 interviews (13 parents, 11 physicians, 13 nurses, 6 allied health professionals, 6 leaders). Five themes emerged: (1) assumptions and bias regarding specific groups who use LOE for care, (2) importance of trust and relationships, (3) importance of language-concordant care, (4) workarounds to address communication challenges, and (5) the "double-edged" sword of technology. Participant-suggested strategies to improve communication included increasing interpreter access for parents and staff, optimizing technology use, and minimizing bias and assumptions through training. CONCLUSIONS: Parents of CMC and staff identified challenges and opportunities related to communicating with hospitalized families who use LOE for care. Solutions to improve communication and safety for these families should be attuned to needs of all parties involved.

Creating Culturally Adapted Multilingual Materials for Research.

Patients who speak languages other than English are frequently excluded from research. This exclusion exacerbates inequities, biases results, and may violate federal regulations and research ethics. Language justice is the right to communicate in an individual's preferred language to address power imbalances and promote equity. To promote language justice in research, we propose a method to translate and culturally-adapt multifaceted research materials into multiple languages simultaneously. Our method involves a multistep approach, including professional translation, review by bilingual expert panels to refine and reach consensus, and piloting or cognitive interviews with patients and families. Key differences from other translation approaches (eg, the World Health Organization) include omitting back-translation, given its limited utility in identifying translation challenges, and limiting expert panelist and piloting-participant numbers for feasibility. We detail a step-by-step approach to operationalizing this method and outline key considerations learned after utilizing this method to translate materials into 8 languages other than English for an ongoing multicenter pediatric research study on family safety-reporting. Materials included family brochures, surveys, and intervention materials. This approach took ∼6 months overall at a cost of <$2000 per language (not including study personnel costs). Key themes across the project included (1) tailor scope to timeline, budget, and resources, (2) thoughtfully design English source materials, (3) identify and apply guiding principles throughout the translation and editing process, and (4) carefully review content and formatting to account for nuances across multiple languages. This method balances feasibility and rigor in translating participant-facing materials into multiple languages simultaneously, advancing language justice in research.

A Coproduced Family Reporting Intervention to Improve Safety Surveillance and Reduce Disparities.

OBJECTIVES: Examine family safety-reporting after implementing a parent-nurse-physician-leader coproduced, health literacy-informed, family safety-reporting intervention for hospitalized families of children with medical complexity. METHODS: We implemented an English and Spanish mobile family-safety-reporting tool, staff and family education, and process for sharing comments with unit leaders on a dedicated inpatient complex care service at a pediatric hospital. Families shared safety concerns via predischarge surveys (baseline and intervention) and mobile tool (intervention). Three physicians with patient safety expertise classified events. We compared safety-reporting baseline (via survey) versus intervention (via survey and/or mobile tool) with generalized estimating equations and sub-analyzed data by COVID-19-era and educational attainment. We also compared mobile tool-detected event rates with hospital voluntary incident reporting. RESULTS: 232 baseline and 208 intervention parents participated (78.2% consented); 29.5% of baseline families versus 38.2% of intervention families reported safety concerns (P = .09). Adjusted odds ratio (95% CI) of families reporting safety concerns intervention versus baseline was 1.6 (1.0-2.6) overall, 2.6 (1.3-5.4) for those with < college education, and 3.1 (1.3-7.3) in the COVID-19-era subgroup. Safety concerns reported via mobile tool (34.6% of enrolled parents) included 42 medical errors, 43 nonsafety-related quality issues, 11 hazards, and 4 other. 15% of mobile tool concerns were also detected with voluntary incident reporting. CONCLUSIONS: Family safety-reporting was unchanged overall after implementing a mobile reporting tool, though reporting increased among families with lower educational attainment and during the COVID-19 pandemic. The tool identified many events not otherwise captured by staff-only voluntary incident reporting. Hospitals should proactively engage families in reporting to improve safety, quality, and equity.

Physiologic biomechanics enhance reproducible contractile development in a stem cell derived cardiac muscle platform.

Human pluripotent stem cell-derived cardiomyocytes (hPSC-CMs) allow investigations in a human cardiac model system, but disorganized mechanics and immaturity of hPSC-CMs on standard two-dimensional surfaces have been hurdles. Here, we developed a platform of micron-scale cardiac muscle bundles to control biomechanics in arrays of thousands of purified, independently contracting cardiac muscle strips on two-dimensional elastomer substrates with far greater throughput than single cell methods. By defining geometry and workload in this reductionist platform, we show that myofibrillar alignment and auxotonic contractions at physiologic workload drive maturation of contractile function, calcium handling, and electrophysiology. Using transcriptomics, reporter hPSC-CMs, and quantitative immunofluorescence, these cardiac muscle bundles can be used to parse orthogonal cues in early development, including contractile force, calcium load, and metabolic signals. Additionally, the resultant organized biomechanics facilitates automated extraction of contractile kinetics from brightfield microscopy imaging, increasing the accessibility, reproducibility, and throughput of pharmacologic testing and cardiomyopathy disease modeling.