RESUMEN
OBJECTIVES: Breast cancer remains a prevalent disease in women worldwide. Though advancements in breast cancer care have improved patient survival, a breast cancer diagnosis, and subsequent interventions have a lasting impact on patients' lived experiences during the pandemic. METHODS: We present the collaborative learning process from this patient engagement workshop series as a community-academic partnership. Narrative medicine tools were used to recount patients' lived experiences following diagnosis, where both patients and researchers shared their cancer research activities in each workshop, and the role of the multidisciplinary healthcare team was discussed. KEY FINDINGS: We used an iterative approach to cohort building, narrative development, and the use of multiple media formats to capture stories. Over 20 patients with breast cancer shared their stories for the first time since their diagnosis with a wider audience. Here, we present the learning process and considerations from this event. CONCLUSIONS: Understanding patients' lived experiences can support researchers and healthcare professionals in developing an empathetic approach to shared healthcare decision making. Moreover, understanding the lived experiences of patients is critical to addressing disparities in healthcare.
RESUMEN
OBJECTIVE: To examine the relationship of race/ethnicity, language, communication with providers, and interpreter use with timeliness of illness and routine care for children in managed care Medicaid. STUDY DESIGN: Cross-sectional study using data from the Consumer Assessment of Health Plans Survey, which was administered to parents of children less than 15 years of age in Washington State managed care Medicaid in 2000. METHODS: Predictors of interest were child's race/ethnicity, parent's primary language at home, difficulty communicating with the child's providers because of language, and need and use of interpreters. The primary outcomes were how often (always, usually, sometimes, or never) the child received illness and routine care as soon as wanted. Analyses used multivariate ordered logistic regression and model-based direct adjustment. RESULTS: A total of 5142 children were included. In adjusted analyses, children received illness and routine care significantly less often than wanted if the parent's primary language at home was not English; the parent ever had difficulty communicating with the provider; and the parent needed but did not always get an interpreter. CONCLUSION: Language barriers were associated with decreased timeliness of care for children in managed care Medicaid.