Perceptions of patient participation amongst elderly patients with end-stage renal disease in a dialysis unit

Aim: A patient's right to influence treatment and health care has been guaranteed by Norwegian law since 1999. The aim of this study was to explore how elderly patients with end-stage renal disease who are undergoing treatment with haemodialysis for the rest of their lives perceive patient participation in a dialysis unit. Methods: This study, which was inspired by critical discourse analysis, drew on data derived from transcribed interviews with 11 patients. Findings: Two discourses related to patient participation were identified. The first and dominant discourse was called the health-care team's power and dominance. Both environmental conditions and the team's practice exercised power and control over the patients. The patients trusted the health-care team, but some felt powerless and were afraid of what might happen if they refused to follow the instructions. The health-care team owned the knowledge and decided what the patients needed to know. Most of all the patients wanted dialogue about the future. After years of treatment, patient identity seemed to be threatened by this situation. The second discourse is called the patients struggling for shared decision-making. Some patients struggled to be involved in decision-making about 'dry weight', diet, blood access and time of treatment when these factors threatened their well-being and the quality of their daily lives. Conclusions: The elderly patients' right to participate in their haemodialysis treatment did not seem to be well incorporated into the social practices of haemodialysis units. Changing the social practices in the dialysis units from a paternalistic ideology to an ideology of participation will require consideration of the context, the dialogue and the process of shared decision-making with the patient.