Perspectives on Kidney Disease Education and Recommendations for Improvement among Latinx Patients Receiving Emergency-Only Hemodialysis

Abstract

Importance: In most states, undocumented Latinx immigrants with kidney failure receive dialysis in acute care settings on an emergency-only basis. How much kidney disease education Latinx immigrants receive and how to improve kidney disease education and outreach among Latinx populations are unknown. Objective: To understand the kidney disease educational gaps of Latinx individuals who need but lack access to scheduled outpatient dialysis. Design, Setting, and Participants: This qualitative study used semistructured interviews in a Texas hospital system from March 2020 to January 2021 with 15 individuals who received emergency-only dialysis when they were first diagnosed with kidney failure. Demographic information was collected, and a thematic analysis was performed using the constant comparative method on interviews after they were audio-recorded, translated, and transcribed verbatim. Data analysis was performed from April 2020 to February 2021. Main Outcomes and Measures: Subthemes and themes from semistructured interviews. Results: All 15 persons interviewed (9 male individuals [60%]; mean [SD] age, 51 [17] years) identified as Hispanic, 11 (73%) were born in Mexico, and none reported knowing about their kidney disease more than 6 months before starting dialysis. The themes identified were (1) lack of kidney disease awareness, (2) education provided was incomplete and poor quality, (3) lack of culturally concordant communication and care, (4) elements that Latinx patients receiving emergency-only dialysis want in their education, (5) facilitators of patient activation and coping, and (6) Latinx patient recommendations to improve community outreach. Conclusions and Relevance: Latinx adults receiving emergency-only dialysis are usually unaware of their kidney disease until shortly before or after they start dialysis, and the education they receive is poor quality and often not culturally tailored. Participants made feasible recommendations on how to improve education and outreach among Latinx communities.