One of the seven ways people with type 2 diabetes pursue their autonomy as 'competency in shaping one's life' is self-management. People with diabetes exercise self-management by a set of particular activities. We consider these specific series of practices as self-management processes. These processes provide understanding how self-management in relation to autonomy actually happens and is achieved. The analysis of participant's descriptions of their self-management practices as related to autonomy resulted in three processes: daily, off-course, and preventive self-management. Figure 1 gives an overview of the process steps. Most participants reported all three kinds of self-management. Some practised all of them while others reported (a) particular self-management process(es) at a given time. Additionally, some participants said that they took process steps in a linear order, while others reported that they occasionally repeated some steps. Some said that the processes were recurrent and cyclical. Some might not take all steps, and others might take their steps in a slightly different sequence. In this study, the participants described short-term (off-course) and long-term (daily and preventive) self-management processes. They also mentioned that a short-term self-management strategy might turn into a long-term one. People evaluate the effect of the short-term decision made and the action taken. The decision to turn a short-term self-management strategy to a long-term one depends upon how well the off-course event was dealt with. We report analytical steps, but in practice these steps occur simultaneously and in an interactive process.
Daily self-management
Daily self-management is related to daily diabetes activities such as administering insulin, exercising, and resting. It includes activities that belong to the treatment regimen and activities for staying healthy in general. Daily self-management consists of three steps: adhering, adapting, and performing routinely.
Adhering
People with diabetes adhere with the treatment regimen as prescribed by healthcare professionals. They stick to the rules and carry out self-management activities as required by the treatment plan, e.g., they take their medication exactly on time.
"At the very beginning, I did as I was told. I started taking my medication and eating precisely on time, doing exercises and losing weight, going to have my blood and blood pressure checked every 3 months."
Some participants said that they adhered rigorously to 'new' rules when they had to deal with a new treatment. They had been suffering from diabetes for a longer period and already had some experience with diabetes self-management. This kind of adherence is temporary until people with diabetes become more confident with the new treatment.
"The units of insulin, yes, I really need supervision and monitoring. I do not change one unit without consulting my nurse. I am still somehow inexperienced at using insulin. I know my body very well, but I do not know its reaction (to insulin) yet. (...) At the beginning, I asked a lot of questions. Now I have gained more confidence, and I ask fewer questions."
Adapting
People with diabetes adapt to the prescribed treatment regimen. They make small adaptations, like changing their food patterns. Then they alter the treatment to fit their lifestyles better, or because they perceive their measures as good enough, e.g., acceptance of a fairly low blood sugar level. Adapting the treatment is often related to self-management issues that people are familiar with. They deal with self-management strategies more flexibly.
"My average blood sugar level has been decreasing in the last few months. At my last visit it was low. I am on oral medication and I stuck to a rigid diet. I handle my diet more flexibly now. Nowadays I use more noodles and rice in my daily cooking."
Acting routinely
Diabetes care activities become a habit. People with diabetes have routines that are embedded in their personal lives. They are confident in these activities.
"I do the same thing every day. It has become a habit. In the morning, I take my medication, I take care that I eat a mid-morning snack, then I cook. I rest a little. Later in the afternoon, I go for a walk or take some other exercise. I take a piece of fruit with me. I have dinner. I do a self monitoring sugar profile once every 2 weeks."
Off-course self-management
Off-course events include certain health problems caused by diabetes that may occur – sometimes repeatedly, e.g., unanticipated blood sugar levels. When their blood sugar concentrations are below or above a certain value, people take action in response. Off-course self-management includes five steps: becoming aware, reasoning, deciding, acting, and evaluating.
Becoming aware
People recognize certain patterns that are unusual. They become aware of irregularities by listening to their bodies, by learning from previous experience, and by monitoring their glucose parameters. Awareness can be improved with a diabetes education course and by consulting the DSNs.
"I feel it when my sugar level is not what it should be. I feel dizzy and sometimes I become irritated. It happens when I work hard; for example, when I clean the house."
Reasoning
People try to reason why irregularities occur. They explore their self-management activities critically to find an explanation for their unusual blood sugar levels. People with diabetes also consider other bodily symptoms and glucose parameters to support or refute possible causes.
"I checked my glucose levels yesterday. The glucose profile for the day was quite high. I had a very busy weekend, and a lot of friends visited us. I also ate different food. I really had peaks. I think it happened because of the busy weekend."
Deciding
People with diabetes make decisions to solve certain off-course events. They decide how to deal with the health problem at hand.
"Some time ago I had hypos in the evenings. I decided to decrease the amount of the fast-acting insulin."
Acting
People with type 2 diabetes take action on the relevant decision. They actively undertake specific actions to resolve the off-course event, e.g., by taking some extra fast-acting carbohydrates.
"When I notice that my sugar level is too low, I eat some chocolate."
Evaluating
After carrying out a certain self-management activity, people observe the reactions of their bodies and their blood sugar parameters. They critically evaluate the effect of their decisions and actions.
"Some time ago, I had hypos 3 days in a row. Then I decreased the amount of insulin that I injected in the morning. And it worked out well. I have not had hypos for quite some time."
Preventive self-management
Preventive self-management means that people do certain things to prevent health problems. Diabetes-related health problems encompass short-term complications, such as hypoglycaemia, and secondary long-term complications, such as blindness. Preventive self-management is composed of four steps: experiencing, learning, being cautious, and putting into practice.
Experiencing
People may undergo a health experience such as a severe hypoglycaemia. This experience is perceived as very unpleasant, frightening, or threatening.
"I have had some hypos (hypoglycaemia) during my vacation. I was not eating the right things. I did not eat carbohydrates because I wanted to loose weight. At the same time, I walked a lot and then I had several hypos. It was very unpleasant."
People are sometimes faced with negative health events in the family. In one case, a family member had diabetes and suffered from severe health problems, some of which were short-term and some long-term.
"I am afraid of getting a really bad hypo. My mother had a very severe hypo. She was unconscious, and I thought that she was dead. I am being very careful not to get one, but I'm still afraid. I am being very careful to prevent anything like that."
Learning
People learn about short-term and long-term complications caused by diabetes. They gain practical knowledge from experience with them. The DSNs provide a lot of technical and generic learning. People also get information by reading diabetes literature and taking part in diabetes education programs.
"The nurse explained to me that I can get a lot of health problems if I do not take care of my diabetes. I can get problems with my feet, kidneys, and eyes. It is important to know all these things."
Being cautious
People with type 2 diabetes are cautious in situations that could cause short-term and long-term health problems. They also listen to their bodies to recognize certain symptoms early.
"The nurse explained the symptoms of hyper- and hypoglycaemia to me. She also gave me some literature about it. I am much more cautious about these things now and I observe and listen more carefully to my body."
Furthermore, people with diabetes monitor their blood sugar levels regularly. They are cautious because such irregularities might cause long-term problems.
"A few days ago, my sugar levels for the day were very unstable. I need to keep them within a certain range because of all the health problems that might develop over the years."
Putting into practice
People with diabetes put particular strategies into practice to prevent a short-term health complication such as hypocalcaemia.
"If I go cycling, I always have an apple in my bag to get enough carbohydrates."
People are aware of the long-term health problems of diabetes. They implement courses of actions to prevent these complications.
"I try to slow down the process of long-term complications. I cycle a lot. It helps keep my sugar levels low and stable. I cycle, I take long walks, and I keep myself busy."
The involvement of diabetes specialist nurses and family caregivers
Diabetes specialist nurses
DSNs are important to diabetes self-management. They teach, guide, and advise people with diabetes about self-management issues. DSNs confirm, modify, monitor, and change self-management strategies. They help to develop self-management schemes and skills.
"Now I know that I will see her regularly. If something is not right, she explains to me what went wrong and what I need to change. She monitors my health status. She advises me. If I need to know something, I give her a call."
The DSNs are available as a safety net to assist people when they have run out of self-management strategies or find themselves in unfamiliar situations.
"Some time ago, I had a hypo during the night. I did not know how to interpret this. It makes me feel insecure. I called my nurse."
The role of the DSNs depends on the complexity of the self-management. If the complexity decreases or the diabetes management becomes stable, the role of DSNs may become less significant. In some cases, as with radical changes in the treatment plan or episodes of severe illness, the role of DSNs may expand temporarily.
"I think that, if I have serious health problems, her (the nurse's) role will get bigger. She needs to take over the lead. This is not necessary right now because my condition is stable. I handle things myself."
Family caregivers
Diabetes self-management becomes part of the family life. People with diabetes embed the diabetes in the family context in different ways. All participants in this study state that family caregivers support them in their diabetes self-management. The involvement differs from person to person. Some participants call on their relatives in an emergency.
"He (the participant's husband) knows how to inject insulin. We learned it together. He also pricked my finger with a needle. I do everything myself now, and I try to solve all my own problems, but he takes care of me too. He only comments on my diabetes things every now and then, but he needs to know everything. This is important to me. If I am unconscious and need to be admitted to the hospital, he must be able to provide the necessary information."
Some family caregivers help the person with some self-management activities, for example, by preparing meals.
"My wife takes care of the cooking. I took a course about diet, and my wife knows how to cook for someone with diabetes. She takes care of my meals and my eating pattern. I manage everything else myself."
Some participants see the family caregiver as a partner or companion with whom they share all self-management. In these cases, family caregivers have a significant part in every single self-management step.
"She' (the participant's wife) 'is my assistant. She cooks, she thinks with me, she takes care of the medication. I also do all these things, but she keeps me company in managing the whole diabetes thing, which is essential to me."