RESUMO
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.
Assuntos
Criança Hospitalizada , Barreiras de Comunicação , Hispânico ou Latino , Relações Profissional-Família , Pesquisa Qualitativa , Humanos , Criança , Masculino , Feminino , Pais/psicologia , Hospitais Pediátricos , Comunicação , Entrevistas como Assunto , Pré-EscolarRESUMO
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 â¼6 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.