BackgroundAlthough relatively rare, encapsulating peritoneal sclerosis (EPS) is nonetheless a major concern within the renal community. Risk of developing EPS is associated with long-term peritoneal dialysis. Surgery now offers better outcomes. Research into EPS continues to focus on imaging and early detection methods, genetics, biomarkers and preventive strategies. No previous studies have examined patients' experiences of EPS, or their perception of the effect of EPS on health-related quality of life. AimsThe aim of the present study was to explore the experience of patients who have undergone surgery for EPS in one centre in the north of England.MethodsNine participants were recruited out of a total of 18 eligible. Most participants were interviewed twice conducted on two occasions over a 12-month period. This was October 2009 to October 2010.Analysis Interpretative data analysis was conducted, following the philosophical tradition of hermeneutics. Following the first interview a summary was sent to each participant before the second interview. Both interviews were analysed and are presented as themes.ResultsEPS presents the biggest challenge these patients have had to face since developing chronic kidney disease. Three major themes were identified each with subcategories: 1. Understanding EPS -self interpretation, 'not being heard', gaps in information and knowledge, diagnosis shock and relief-confronting death 2. EPS an embodied experience- endurance, bodily awareness from others and within, struggles with eating 3. Adjustments and Transitions 'A journey of survival'- losses, support structures and their impact and locating self.ConclusionsThe findings of this study highlight a number of important issues relevant to clinical practice, including lack of information and understanding of EPS, particularly its early symptoms, the extent of the surgery and the support required. At the time patients transfer from peritoneal to haemodialysis, the provision of adequate information about the risks and potential early signs of EPS may improve not only their experiences but in addition may assist its early detection.