“I Try Not to Even Think About My Health Going Bad”: a Qualitative Study of Chronic Kidney Disease Knowledge and Coping Among a Group of Urban African-American Patients with CKD

Abstract

Context: African Americans with chronic kidney disease (CKD) are more likely to progress to end-stage renal disease (ESRD). However, African Americans are less likely to receive care to delay progression of their CKD and to prepare for ESRD treatment. Objective:The objectives of the study are to understand knowledge among urban, African-American patients diagnosed with CKD and to discover ways they managed their illness and prepared for kidney disease progression.Design: A qualitative study was conducted using structured interviews. Thematic analysis was used for data interpretation. All 23 participants identified as African American and had CKD but had not yet reached ESRD requiring renal replacement therapy (RRT). Over half of the participants were women (57%), and the mean age was 53 years old.Results: Three themes emerged from the data. African Americans often did not know the severity of their CKD. They struggled to complete all of the diet, exercise and medication tasks recommended to manage their health conditions, including CKD. Finally, participants, even those with Stage 5 CKD, viewed progression to RRT in the next 12 months as unlikely. Conclusion:African Americans face many barriers to CKD self-care and preparation for ESRD. Improving outcomes requires clinicians to help patients understand the severity of their CKD, to make informed choices about their care, all the while motivating patients to take actions to prevent CKD progression.

Patient perspectives on chronic kidney disease and decision-making about treatment. Discourse of participants in the French CKD-REIN cohort study

“…What makes it stressful is not its physical impact but its progression towards kidney failure. Previous studies showed similar results [ 31 , 32 ]. Patients' current health status may lead to cognitive avoidance, which may delay decision-making [ 31 , 33 ].…”

“…Previous studies showed similar results [ 31 , 32 ]. Patients' current health status may lead to cognitive avoidance, which may delay decision-making [ 31 , 33 ]. It might nonetheless be adaptive in the short term, especially at stage 3, if it does not prevent patients from engaging in healthy behaviors.…”

The psychosocial needs of patients who have chronic kidney disease without kidney replacement therapy: a thematic synthesis of seven qualitative studies

“…They could see why I could chose it, that it did fit in with my life better and, if anything, I'd made up my mind anyway and after I was talking to them, it confirmed it.” [ 23 ] Supporting the patients’ relationships Healthcare professionals. Patients valued attentive, non-judgemental medical care but sometimes found this was lacking, creating a sense of distrust and disrespect Engaging patients in educational conversations about CKD and creating a space to listen and answer questions could improve their relationships with healthcare professionals [ 20 , 22 – 26 ] Moderate confidence Minor concerns regarding methodological limitations, coherence and relevance and moderate concerns regarding adequacy “And everybody always- were just were really concerned and spent time with me and explained and whatever, so it was really a partnership in making sure that I stayed healthy... I liked how they coordinated and they’d be like, ‘ok, you’re going to have to see three doctors, but let’s just poke you once.’ So then I would bring the requisition to everybody and then they would fill out one form so that I’m [not] going getting blood work every, you know, day...” [ 20 ] “He should take a little more interest, rather than just fob me off and say, go see another doctor, because it may be related or not related to the kidney problem.” [ 26 ] “I think that one of the things we all have felt that I don't think anyone has said, is the problem of people meaning to tell us or give us a misconception of how you are going to feel.” [ 25 ] Peers.…”

Enfermedad renal crónica avanzada: ansiedad, depresión y percepción de amenaza

“…Este dato resulta reseñable porque los pacientes de otros estudios, con una enfermedad crónica no perciben su enfermedad como tan amenazante (Adrián-Arrieta & Casas-Fernández, 2017;Weldam et al, 2013). No obstante, cabe señalar que hay pacientes de nuestra muestra que no perciben la ERCA como amenazante, quizás debido a un menor conocimiento acerca de ella o a un proceso de negación de la enfermedad (Lissanu et al, 2019).…”