Unique diabetes study shows how insulin pumps impact quality of life

Being treated for diabetes with an insulin pump, an aid that is attached to the body to provide a continuous supply of insulin, has a strong impact on a person's quality of life. The pump can be a lifeline, but also a bothersome shackle. This is shown in a unique long-term study performed at the Academy of Health and Society, Dalarna University, Falun, Sweden in collaboration with the Clinic of Internal Medicine at Falun Hospital as well as Uppsala University and Umeå University.

The finding is part of a larger study where, for four years, researchers followed a group of adults with type-1 diabetes being treated with an insulin pump. The group's blood glucose levels, in terms of HbA_1c, and their satisfaction with the treatment were examined via blood samples and surveys, respectively.

The researchers then continued their long-term monitoring with interviews, after the subjects had been using an insulin pump for more than five years. The qualitative interview method has come to be a more and more important complement to traditional research methods in recent years. There have only been a few such studies in the world. Qualitative methods yield a good picture of how the individual perceives and deals with his/her everyday life with a life-long disorder.

The results of the interviews evinced a pattern that could be divided into various themes. The insulin pump was perceived to be a lifeline in the sense that it brought greater independence, greater control of the subject's own life situation, and that life had become normalized. On the other hand, the pump was perceived as being a shackle, meaning that the subject was dependent on the technology, felt stigmatized, and was weighed down by the disease. Among interviewees, some had a generally favorable view of the treatment with an insulin pump, while others oscillated between a favorable and an unfavorable view, with a third group expressing a predominantly negative view. These themes and views could not be related to blood glucose levels, which indicate that it is not enough to measure health based solely on medical examination methods. To get a better understanding of, and a more holistic picture of health and quality of life, it is necessary to analyze narratives from the individual subjects' own perceptions, both as medical parameters and as health surveys.

In the interviews Janeth Leksell, one of the researchers and a lecturer at the Falun campus of Dalarna University, could hear descriptions of the insulin pump like the following:

• My first step toward better self-esteem
• The pump means freedom and flexibility

But also:

• I like dresses that show your figure, but it's hard to wear them with a pump. At home I often put the pump in my bra, so I have three breasts. The pump can feel like a shackle. You feel you're locked into something.

Caring staff needs to be conscious of how the insulin pump affects the everyday lives of patients, lives that are not only about diabetes. The findings of this study may provide guidance and a platform for diabetes nurses and physicians when they meet with and try to support patients living with insulin pumps, according to Anna Garmo, the diabetes nurse who directed the study.