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

PURPOSE: To reveal the essence of self-advocacy experiences among patients with chronic kidney disease (CKD), aiming to describe the fundamental structure of these experiences. METHODS: 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. RESULTS: 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). CONCLUSION: 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.