“It follows me like a shadow.” A phenomenological study of fear of disease progression in patients on maintenance hemodialysis

Purpose While quantitative studies have documented the prevalence and correlates of fear of disease progression (FoP) among patients on maintenance hemodialysis (MHD), little is known about how these patients subjectively experience, cognitively process, and emotionally respond to the threat of disease progression in their daily lives. This phenomenological study aims to explore the multidimensional psychological experiences of FoP in MHD patients, thereby providing a basis for developing targeted nursing interventions. Patients and methods This study employed a phenomenological qualitative research approach. From February to October 2025, purposeful sampling was conducted at the Second Affiliated Hospital of Anhui Medical University. Among 18 eligible patients screened (scoring ≥34 on the Fear of Progression scale), data saturation was achieved after interviewing 14 maintenance hemodialysis patients, who were included in the final analysis. Semi-structured interviews were conducted, and the interview data were analyzed using Colaizzi's seven-step analytical method. Results Four themes and 14 subthemes were identified: (1) Personal Factors: demographic characteristics, health literacy level, past health history, self-efficacy; (2) Disease and Treatment Factors: dialysis-related indicators and complications, burden of dialysis treatment, cognitive biases regarding the disease; (3) Psychological and Social Adaptation Factors: negative emotional states, coping style types, social role adaptation difficulties, traumatic medical experiences; and (4) Family and Social Support Factors: family support, social support networks, communication effectiveness within the healthcare team. Conclusion Patients undergoing maintenance hemodialysis commonly experience psychological fear of disease progression, which was described as relating to multiple interacting factors and manifests in diverse coping strategies. This underscores the need for healthcare providers to dynamically assess patients' psychosocial status and implement systematic, individualized intervention support, including cognitive-behavioral strategies and peer support groups tailored to patients' problem-focused versus emotion-focused coping styles.