Managing a life-threatening condition: a grounded theory of self-management among people with chronic kidney disease receiving maintenance haemodialysis

Self-management is central to living with chronic illness, but condition-specific explanations of how it develops as a process among people receiving maintenance haemodialysis, a life-sustaining yet demanding treatment, remain limited. To develop a substantive grounded theory explaining how self-management unfolds among people with chronic kidney disease (CKD) receiving maintenance haemodialysis. Qualitative study using the systematic grounded theory approach of Corbin and Strauss, reported according to COREQ. Twenty-eight participants were recruited from two haemodialysis centres in Iran using purposive and theoretical sampling: 12 people receiving haemodialysis, five family members, six haemodialysis nurses, one nephrologist, one social worker, one nutritionist and two members of kidney-related non-governmental organisations. Data were generated through 29 individual, semi-structured interviews (approximately 23 h), conducted between April 2024 and August 2025, and field notes. Data collection and analysis were concurrent and used open coding, analysis of properties and dimensions, conditional/consequential matrix analysis, constant comparison, memo writing and negative-case analysis. Analysis of 1,285 initial codes yielded 726 final codes, 49 subcategories and 12 categories. Participants’ main concern was “threat to life”, shaped by five contextual conditions: four that sustained or intensified the threat (complexity of the patient’s health condition, perceived health threat, limited self-management capacity and healthcare system inefficiency) and comprehensive social support, an enabling condition that modified the capacity to respond. Participants responded through four interconnected, non-linear processes—trying to accept the new condition, discovering multiple sources of support, trying to adapt to the consequences of haemodialysis, and trying to create a new lifestyle—which participants perceived as leading to an improved quality of life with haemodialysis, development of self-management skills and enhanced self-management capacity. The core category was “effective management of life-threatening conditions”. Self-management in maintenance haemodialysis is a dynamic, relational and context-dependent process organised around managing a perceived threat to life. It extends beyond treatment adherence to acceptance, mobilisation of support, adaptation, reconstruction of everyday life, emotional and spiritual self-care and self-monitoring. Nurses should assess where a person is in the self-management process and tailor education, emotional and social support, care coordination and links with community resources accordingly. Self-management support should be addressed at the level of the health system, not only the individual. Not applicable.