Aims: This paper reports a study whose aim was to describe the misunderstandings that Swedish patients with type 2 diabetes have about their illness and treatment.
Background: It is well known that patients with type 2 diabetes need extensive support and education to learn to manage and live with their illness. However, a Swedish survey has shown that only 34% of these patients had good metabolic control. Despite intensive education and support, misunderstandings about both the illness and treatment seem to be common. Furthermore, patients are currently complaining that health care services sometimes obstruct rather than support self-care and learning.
Methods: We videotaped 18 authentic encounters between a patient with diabetes and a physician, or a diabetes nurse. Patients then viewed the video and reflected on what took place during the consultation. Video-recordings and transcribed reflections were analysed thematically.
Results: Five themes emerged from the analysis: (a) Type 2 diabetes is not 'real diabetes'; (b) Complications - horror visions or suppression; (c) Self-monitoring of blood glucose and medication is a routine, not a learning tool; (d) Diet - the important thing is to reduce fat and (e) 'Physical exercise is good, they tell us'. Four of the 18 patients showed no misunderstandings. Misunderstandings of diabetes and its treatment were thus common and numerous, despite regular checkups and good access to care. The patients adhered to prescribed regimens but did not know why they performed many routines or how they could benefit from them.
Conclusion: The results show that misunderstandings of illness and treatment were common. We suggest that diabetes educators should base their education on this variation of understanding, using a phenomenological approach to learning. Reflecting on this kind of varied experiences can be a powerful tool to help people to move from 'novice to expert' and apply basic routines to new situations.