Tensions in compliance for renal patients – how renal discussion groups conceive knowledge and safe care

Abstract

Much of the medical literature on patient compliance explores why patients fail to follow practitioners’ instructions. This paper explores perspectives on ‘compliance’ expressed in online discussion groups for kidney patients. Discourse analysis was used to investigate how contributors conceptualise knowledge and the role of the renal patient. In the discussion groups, patients were sometimes seen to have better understanding of the details of their illness than some practitioners, a focus born of inhabiting their situation and therefore having more at stake. Some patients set themselves the task of supervising their own care, double checking the work of practitioners. This did not threaten biomedical knowledge, but these counter-discourses challenge professional boundaries by making it the prerogative of patients to obtain biomedical knowledge. I explore issues of surveillance and frustration, and the potential usefulness of patients’ overseeing their own safety, while flagging the potential plight of less ‘empowered’ or motivated patients.

Keywords:

• patient compliance
• sociology
• lay knowledge
• kidney failure
• renal internet support groups
• discourse analysis