A team of Swedish medical researchers interviewed 24 people who had diabetes to see if there were factors that got in the way for self-caring behaviours that enhanced diabetes management. They found that some patients didn’t believe diabetes was all that serious, that it was way down the priority list compared to dealing with other life problems, that they didn’t believe it was under their control anyway and that it simply wasn’t worth sacrificing a good time for.
Any of this sound familiar?
Other illnesses, emotional distress, prioritising the needs of others and money problems all seemed to get in the way of getting to grips with self- care routines that are the crux of effective diabetes management.
For patients who are struggling with the condition, the authors think that medical professionals would be far better of focusing on what is desirable and realistic for individual patients rather than trotting out the “usual” advice, which is often perceived as being totally beyond the ability of some people and at some times in their lives.
Family support has been recognised as been a major factor in diabetes management adherence. The health care system and how easily it can be accessed is another environmental factor. Susann Strang, with her nursing background, understands that the patients’ life experiences, current situation, cultural background, beliefs and attitudes all affect their willingness and ability to follow treatment recommendations. If consultations are patient centred rather than protocol centred improvements in glycaemic control can be seen.
The patients who were interviewed for the study came from an area of Sweden with a high number of immigrants and a low socio-economic status. The number of smokers and amount of cardio-vascular disease was higher than more affluent areas in Sweden. A range of type two patients over the age of 18 were given in depth interviews. They were asked, “What does living with diabetes mean to you?”
Many people said that their lives had become more structured and limited by the diagnosis of diabetes. They were aware that food and medicine were basic issues in the control of the condition and had incorporated routines into their lives so that particularly those who had had diabetes for some time almost forgot about it. “For me diabetes is only something I have and I will have it as long as I live. I don’t think so much about it. It is like having a cup of coffee in the morning, or like going to the laundry.”
The lack of symptoms accompanying high blood sugars often led people to relax about diabetes management. Work responsibilities, home problems, lack of support, loneliness, and frank depression all reduced quality of life and put diabetes into the background. Immigrants often missed their old lives and countries or worried about relatives. Some had given up prior religious beliefs as a result of trauma they had witnessed.
Cardiac disease, high blood pressure, inflammatory problems, chronic obstructive lung disease and depression often seemed more important issues than diabetes, particularly when it was almost without any perceptible symptoms.
Some people thought that it was their fate to get diabetes. They also did not believe that changing their lifestyle was their responsibility. “The only thing the doctor complains about is losing weight. No matter how hard I try I can’t get below 84kg. I’m just like my parents. So it has to do with the genes. And you can’t change them.”
Respondents sometimes discussed feeling hopeless and resigned to the situation. One even thought that society was to blame for his lack of motivation to change his lifestyle.
Although most patients had had nutritional advice, most had trouble keeping to the plan. The social factors of enjoyment of food were seen as more important than eating right for diabetes control. The taste of food, perceived boredom of healthy food, and cooking ability all affected the degree to which people were willing to change their diet.
The majority of respondents were well aware of the positive effects of physical activity yet some took no exercise at all. To explain this they said they were lazy, exercise was boring, it was more convenient to sit on the couch or at a computer, it was painful to exercise, they were too tired, they were depressed, they had sleep problems, they had no idea how to go about it and they didn’t have enough money to exercise. Some worried that exercise was bad for the heart.
Sadly other studies by ST Miller and P Jallinoja also have identified the same unwillingness to change to a more beneficial lifestyle is not uncommon among people with diabetes.
The authors recommend that health care professionals learn about the way individual patients view living with diabetes and what type of care they really prefer. As patients can change their views over time, keeping the door open to change is recommended.
The Danish philosopher Soren Kierkegaard said, “If I want to succeed in bringing a person towards a specific goal, I must find out where she is and start from there.”
Adapted from Diabetes in the shadow of daily life: factors that make diabetes a marginal problem. Anders Agard, Vania Ranjbar, Susann Strang. Practical Diabetes March 2016.