Experiences of Patients With Diabetic Kidney Disease on Maintenance Haemodialysis: A Qualitative Study Using a Journey Map.

AIMS: To map the care trajectory of patients with diabetic kidney disease from disease progression to maintenance haemodialysis and identify key risks and nursing care gaps.

DESIGN

A descriptive qualitative study.

METHODS

Individual semi-structured interviews were conducted among patients with diabetic kidney disease undergoing maintenance haemodialysis. Data were analysed using qualitative content analysis and synthesised into a visual patient journey map.

RESULTS

Eighteen participants were included. The care trajectory comprised four stages: insidious progression, acute deterioration, dialysis initiation and dialysis maintenance. Thirty subcategories were identified across three domains: tasks, challenges and emotions. The journey map highlighted three key risks shaping patients' experiences across the disease trajectory: inadequate recognition of disease risk and delayed early management; difficulties in dialysis decision-making; and difficulties in reorganising everyday life alongside an accumulating treatment burden.

CONCLUSION

Patients with diabetic kidney disease experience evolving and cumulative multidimensional challenges as they progress to maintenance haemodialysis. Targeted nursing interventions are needed to improve patients' experiences.

IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Nursing care should strengthen early risk perception and self-management, support shared decision-making about dialysis, facilitate adaptation to dialysis-related lifestyle changes and reduce the cumulative burden of long-term treatment.

PATIENT OR PUBLIC CONTRIBUTION: Patients helped refine the interview guide and provided feedback on the journey map.

REPORTING METHOD: The study was reported in accordance with the Consolidated Criteria for Reporting Qualitative Research.