Experiences of moderate-to-severe demoralization syndrome among patients receiving maintenance hemodialysis: a qualitative study

Abstract

Patients receiving maintenance hemodialysis (MHD) are at high risk of demoralization syndrome (DS), which may adversely affect psychological wellbeing, quality of life, and treatment-related self-management. However, limited qualitative evidence exists regarding their experiences. To explore the experiences of moderate-to-severe DS among patients receiving MHD, focusing on stressors, psychological and behavioral experiences, coping strategies, and stress-buffering resources. A descriptive qualitative design guided by the Stress Process Model (SPM) was adopted. Purposive maximum-variation sampling was used to recruit 15 patients receiving MHD with moderate-to-severe DS (DS-II score >9) from a tertiary hospital in China between January and March 2026. Data were collected through semistructured, face-to-face, in-depth interviews. All interviews were audio-recorded and transcribed verbatim, and the transcripts were verified by participants. Data were analyzed using thematic analysis following Braun and Clarke’s six-phase framework. Four framework-informed themes and 14 subthemes were identified, corresponding to the major SPM domains of sources of DS, impacts of DS, coping strategies, and stress-buffering resources. Two important distinctions were identified: reduced social participation primarily reflected illness- and treatment-related restrictions, whereas social withdrawal represented a more intentional behavioral response associated with greater demoralization; and apparent acceptance of dialysis sometimes reflected helpless resignation and passive compromise rather than adaptive acceptance. DS among patients receiving MHD reflects a complex process shaped by interacting treatment-related stressors, coping responses, and social support resources. Interventions should aim to reduce modifiable stressors, strengthen adaptive coping and perceived control, and support psychological adaptation, functioning, and meaningful engagement during long-term dialysis.