Patient and family perspectives on peritoneal dialysis at home: findings from an ethnographic study.

Abstract

To discuss findings from an ethnographic study, considering the experiences of patients and families, using peritoneal dialysis at home in the United Kingdom. Peritoneal dialysis is a daily, life-preserving treatment for end-stage renal disease, undertaken in the patient's home. With ever-growing numbers of patients requiring treatment for this condition, the increased use of peritoneal dialysis is being promoted. While it is known that quality of life is reduced when using dialysis, few studies have sought to explore experiences of peritoneal dialysis specifically. No previous studies were identified that adopted an ethnographic approach. A qualitative design was employed, utilising ethnographic methodology. Ethical and governance approvals were gained in November 2010 and data were generated in 2011. Patients (n = 16) and their relatives (n = 9) were interviewed and observed using peritoneal dialysis in their homes. Thematic analysis was undertaken using Wolcott's (1994) three stage process: Description, Analysis and Interpretation. This article describes four themes: initiating peritoneal dialysis; the constraints of peritoneal dialysis due to medicalisation of the home environment and the imposition of rigid timetables; the uncertainty of managing crises and inevitable deterioration; and seeking freedom through creativity and hope of a kidney transplant. This study highlights the culture of patients and their families living with peritoneal dialysis. Despite the challenges posed by the treatment, participants were grateful they were able to self-manage at home. Furthermore, ethnographic methods offer an appropriate and meaningful way of considering how patients live with home technologies. Participants reported confusion about kidney transplantation and also how to identify peritonitis, and ongoing education from nurses and other healthcare professionals is thus vital. Opportunities for sharing experiences of peritoneal dialysis were valued by participants and further peer-support services should thus be considered.