Experiences of self-advocacy in patients with chronic kidney disease: a qualitative study

Abstract

To reveal the essence of self-advocacy experiences among patients with chronic kidney disease (CKD), aiming to describe the fundamental structure of these experiences. A descriptive phenomenological qualitative approach with purposive sampling was adopted. From December 2023 to January 2024, 10 patients with CKD from the Department of Nephrology at a tertiary Grade A hospital in Dalian were recruited for semi-structured interviews. The interview guide was based on a conceptual framework of self-advocacy and the data were analyzed using Colaizzi’s seven-step method. Five main themes and 16 subthemes were identified: (1) Difficulty in Accessing Health Information and Divided Health Awareness (e.g., poor health information access, polarization in health awareness, and personality traits); (2) Initial Disorientation and Resistance to the Disease (e.g., disease rejection, disease uncertainty, negative emotional experiences, multidimensional conflicts between illness and life, and self-perceived burden); (3) Seeking Strength through Social Support and Peer Communication (e.g., seeking external support and communication with fellow patients); (4) Growth through Struggle and Self-Rebuilding from Passivity to Initiative (e.g., active resistance to the disease, avoiding negative impacts, building positive mentality, and accumulating disease experience); and (5) Self-Prioritization and Expression of Will (e.g., protection of self-rights and self-prioritization). Self-advocacy among patients with CKD develops through complex, long-term interactions between health-related and social factors. Over time, patients may shift from passive recipients of care to active managers of their health, reflecting greater prioritization of their own needs.

The authors' abstract, as published at the source. International Urology and Nephrology, 2026 · DOI ↗