Aim: This paper is a report of a study conducted to explore how the family members of older people who will undergo haemodialysis treatment for the rest of their lives perceive participation.
Background: The rights of families to participate in treatment and health care are supported by international law, and by national law in Norway since 1999.
Method: This study, which employed an explorative qualitative approach, was carried out in Norway in 2008. Data were derived from transcribed interviews with seven family members underwent critical discourse analysis.
Findings: Three discourse practices about the next of kin perception of participation were found: (1) to care and take control, (2) to struggle for involvement, and (3) to be forgotten and powerless. The next of kin said that they had no dialogue with the healthcare team, and some fought to be included in the decision-making process.
Conclusion: The dominant part of the discourse as expressed by the next of kin seems to be a paternalistic ideology. Thus, finding ways to enable the next of kin to participate in the decision-making process seems to be a major challenge for the healthcare team in the dialysis units.
© 2011 Blackwell Publishing Ltd.