Navigating the Distinct Needs of English- and Spanish-Speaking Patients with Kidney Diseases

Background: Latinx patients have a high burden of chronic kidney disease (CKD) and face barriers such as limited health literacy, mistrust of health providers, and communication issues. Patients of lower socioeconomic status face similar barriers, regardless of their ethnicity. We sought to explore the experiences of patients with CKD who receive care at a US safety-net hospital as well as the potential challenges of introducing a peer mentoring program to support these patients. Methods: We conducted 8 focus groups of 33 adult patients and 27 caregivers who receive CKD care at a safety-net hospital in California. Patients either spoke English or Spanish. Transcripts were analyzed thematically. Results: The median age of participants was 50. 60% were women; 40% Spanish-speaking. All had low enough income to qualify for Medicaid. The themes identfied were 1) the need for more information and better communication, 2) the emotional toll of CKD, and 3) lack of trust (Table). To increase awareness of exisiting peer mentoring programs, patients suggested direct text messages, personalized calls, interactive introductory videos, and having doctors introduce the program during clinic visits. Conclusion: Participants described their kidney disease journey as a labyrinth with emotional distress for themselves and their caregivers. Peer mentors can address barriers of lack of emotional support, communication, and health literacy. Multi-faceted approaches to raising awareness of peer mentoring programs are needed to encourage participation in peer mentoring programs. Illustrative Quotes - Theme Quote Lack of clear information and communication "You come [to clinic] and you ask, what happened.. something is going on...because you don't know the reason why. It has to be from something.” “I did know [about living with dialysis], not until now [at this focus group] that I talked to the woman explaining about her situation, I am like wow, she has [been on dialysis] a long time and has been surviving.” Emotional toll of CKD “Your body is fighting against you, and you don't know why, you don't know what to do, and nobody knows what to do with you. I am living in an underlying fear because I don't know what is going to happen... so abruptly my life changed.” “Every time I wake up, I am grateful to God I am not dead because I was feeling really bad.” Lack of trust "The doctor told me why you are taking this medicine? its damaging more your kidneys. You were not supposed to be taking this medicine, when he gave me those pills... He told me the contrary.” "Every time I come to clinic it's a different doctor and they tell me something different. Do they really know what's going on?"