Myth of empowerment in chronic illness

Abstract

AIMS: This article presents several findings of a study, conducted between 1996 and 1998, to investigate self-care decision making in diabetes. RATIONALE: The underlying assumption of many practitioners is that an invitation to people with chronic illness to participate as equal partners is sufficient to guarantee their empowerment. DESIGN: Using grounded theory, the research examined self-care decision making using a convenience sample of 22 Canadian adults with longstanding type 1 diabetes nominated as expert self-care managers. Participants audiotaped their decision making as it occurred for 3 weeks over the course of one calendar year. These audio-recordings were followed by an interview to clarify participants' decision making and factors that affected their decisions. FINDINGS: Participants identified several covert and subtle ways that practitioners contradict their stated goal of empowerment in their interactions with diabetics. Participants revealed that despite their intention to foster participatory decision making, practitioners frequently discount the experiential knowledge of diabetes over time and do not provide the resources necessary to make informed decisions. CONCLUSION: The article concludes with a discussion of the implications of the findings for practice.