Kidney Failure Patients' Perceptions and Definitions of Health: A Qualitative Study.

Abstract

Patients with kidney failure who have used multiple treatment modalities are a unique source of information for how different options may best fit their values. We aimed to understand how people interpret their health and kidney failure treatment experience to inform providers who facilitate shared decision-making conversations. This qualitative, interpretive phenomenological study explores how patients with kidney failure interpret health throughout their treatment trajectory. We recruited a purposive sample of patients who had used 3 or more kidney failure treatment options, including transplant and dialysis from transplant clinics and online support groups, for semi-structured interviews. Eligible participants were over 18 and spoke English for a total of 7 current transplant, 10 current home dialysis, and 1 current in-center patient. A 6-step iterative process of data analysis occurred concurrently with data collection. Half of the 18 participants were Black; 67% were women. Three interrelated themes emerged from interviews: ability to engage in meaningful activities; working for balance; and living in context. Participants evaluated health according to their ability to engage in meaningful activities while balancing their emotional and physical needs with their life goals. When their social and treatment environments supported their autonomy, participants also considered themselves healthy. The inclusion of only English-speaking patients limits the transferability of findings. A longitudinal design, repeated interviews, observation, and dyadic interviews would increase the health care providers' understanding and interpretation of health. The themes demonstrated patients evaluated health based on ability to engage in meaningful activities while maintaining balance. The treatment context, particularly how health care providers responded to patients' physiological experience, autonomy, and power, influenced interpretation of patient treatment experiences. Integrating patient interpretations of health with quantitative measures of treatment effectiveness can help health care providers better partner with patients to provide effective care for kidney failure.