**Background:** Self-care in haemodialysis patients is often narrowly focused on physical compliance (e.g., diet, fluid restriction, vessel monitoring), yet patients face complex emotional and psychosocial challenges. There is a gap in understanding how long-term haemodialysis patients integrate self-care into their lives. This study aimed to rigorously explore the subjective self-care experiences of patients enduring long-term haemodialysis using a phenomenological approach.
**Methods:** This qualitative study employed phenomenological methods. Participants were outpatients aged ≥19 years who had received haemodialysis for >10 years without kidney transplantation or peritoneal dialysis, recruited from a university hospital haemodialysis clinic in Seoul, Korea. Patients with mental illness, cognitive impairment, or who were inpatients were excluded. From a pool of 90 outpatients, 11 were purposefully selected and 9 participated. Data were collected from 1 July to 31 December 2020 via semi-structured interviews (50–80 minutes each, at least twice per participant, with supplementary interviews ≤30 minutes as needed). Interviews were recorded and transcribed with consent. Analysis followed a three-step phenomenological approach: (1) reading transcripts repeatedly for overall understanding, (2) classifying statements into categories and extracting essential statements via free imaginative variation, and (3) transforming data with focus on psychological underpinnings. Rigour was maintained through participant review of data and feedback from experienced qualitative researchers. Ethical approval was obtained from the institutional review board of Chung-Ang University Hospital (No. C2015002 (1459)).
**Key Results:** Nine participants (4 men, 5 women) with a mean age of 65.7 years (range 52–75) and mean haemodialysis duration of 13 years 9 months (range 10 years 4 months to 18 years 10 months) were included. Primary causes of disease were hypertension (n=5), diabetes mellitus (n=2), and unknown (n=2). Four main themes emerged:
(1) The desire to keep living despite challenges: Participants expressed anger about haemodialysis but gratitude for survival. They experienced physical restraint, loss of control (e.g., Participant 9 felt 'hanging upside down' due to low blood pressure management), and shame (e.g., Participant 5 involuntarily defecated). They used humour and comparative comfort (e.g., 'less painful than chemotherapy') to cope.
(2) Creating one's own dietary principles: Participants developed individualized strategies for fluid and dietary restriction. They learned about their disease, cross-checked information with healthcare providers and peers (including via social media), and monitored their own clinical results. Examples include Participant 5 treating his body as a 'water container' and using a thin straw to sip water without swallowing, and Participant 9 substituting iced coffee with coffee-flavoured dark chocolate and using small plates and chopsticks to reduce intake.
(3) Moving one's body with remaining strength: None reported full adaptation to haemodialysis. Participants experienced severe fatigue, dizziness, weakness, itching, and complications (e.g., intestinal bleeding, cardiovascular events requiring CPR). Despite this, they seized moments of energy to be physically active. Participant 5 lost nearly 20 kg in the first 2–3 years but started farming, finding that rest after sun exposure restored his strength. Participant 7 sprinted to catch buses post-dialysis and felt lighter.
(4) Moving toward independence: Participants gradually achieved varying levels of independence through physical recovery and introspection. They recognized their body's operational principles through repeated movement and exercise. They stepped back from survival conflicts and fear of death, focusing on self-care and caring for others. Examples include Participant 5 giving away harvested crops, Participant 9 caring for her granddaughter, Participant 6 aiming to attend dialysis independently for 10 years, and Participant 2 maintaining fixed daily routines.
**Clinical Implications:** The study reveals that long-term haemodialysis patients develop sophisticated, individualized self-care strategies that go beyond compliance. Physical activity (e.g., moderate exercise, farming) may help prevent fatigue and improve performance, though the relationship between activity and long-term survival remains unclear. Dietary self-management involves cognitive and behavioural strategies that healthcare providers can learn from. Notably, participants rarely expressed hope, distinguishing this study from others; their focus was on enduring and maintaining stability rather than reconciliation or hope for a new life. The findings underscore the need for healthcare providers to integrate patients' experiential knowledge into care plans and to consider emotional and psychological interventions carefully. The study's limitations include a small sample size (n=9) and potential cultural bias from the Korean context, limiting generalisability. Future research should replicate these findings in larger, more diverse populations.