The respondents' perceptions, their goals, and several personal and contextual factors were identified as important factors which affected the patients' perspectives of SMBG. These factors led to a wide variety of performances, and did prove to be interrelated. In Figure , a SMBG model is presented which represents the respondents' perspectives, the influencing factors and how they interrelate. Our analysis revealed that the difference in perspectives between men and women was that feelings of shame towards health care providers about 'poor' readings were only reported by women. First, a description of SMBG in daily practice is provided followed by a review of the factors.
Model: Self-monitoring of blood glucose.
Variety in SMBG performance in daily practice
The individual performance of SMBG differed with respect to frequency, timing, the actual measurement, interpretation of the readings, the resulting action taken, and an evaluation of the outcome. The respondents made their own choices regarding the performance, and they had their own reasons and logic for the choices they made. A wide variety in SMBG performances was seen in this study as a result. 15 respondents reported that their frequency of SMBG use was according to the recommendations provided by their health care provider, 3 respondents reported a lower frequency, 3 respondents reported a higher frequency, and 7 respondents reported that they had received no specific recommendations. In addition, a majority of all the respondents reported that their frequency and timing of SMBG varied from day to day.
'I measure my blood sugar every morning. If it's a bit low, around 6 or so, and I know that I don't have a lot planned for the day, then I don't worry about it. If we are going out somewhere, however, then I think about what we are going to do, and I measure it more often, and I will already have an extra slice of bread in the morning. I think ahead. I don't like feeling hypoglycemic. I want to prevent that. Even, if I am just going somewhere by car, I will do an extra measurement. Imagine if I was to get an hypoglycemia. There are already enough people in the ditch.'
Respondents differed in their interpretation of the readings, the subsequent actions taken, and their evaluation of the outcomes of these actions. For example, a high glucose concentration could lead the patient to adjust the insulin dosage, change the food intake, contact the health care provider or to take no action and adopt a wait-and-see policy.
'I had the self monitoring glucose meter, but I didn't do a lot with it. I figured that things were actually going pretty well. I measured my blood sugar about once per month, and if the results were good, then I thought: things are fine. If the results were not good, then I thought: well, what can I do about it? I don't know. I was being followed by both my family doctor and a nurse specialized in diabetes. My weight was good, I didn't have too much belly fat,... so I figured that things were going all right. So I just waited to see what the next month's results would bring.'
The perception of SMBG: a continuum between 'friend' and 'foe'
Some respondents perceived SMBG as a 'friend', giving them confidence, freedom, certainty and peace of mind. It helped them to achieve their personal goals including good glycemic control, autonomy, control of their diabetes, and the ability to lead a normal life.
'I measure my blood sugar to see if it stays somewhere between 5 and 8. And it is the expectation that you check your own levels once a week. That is the agreement. That gives me a good feeling. Some people get very anxious when they have to prick their finger. Not so for me. On the contrary, it gives me a feeling of security.'
In respondents who were no longer familiar with the symptoms of hypo- and hyperglycemia, SMBG was felt to be helpful in prevention and detection. Most respondents, who perceived SMBG in a positive way, reported that it had become a habitual part of their daily lives.
Other respondents perceived SMBG more as a 'foe'. They mentioned many experiences to support this perception. For example, the finger prick can be painful and can lead to callous and hard spots.
'It is not easy to get a drop of blood. I have got hard black marks on his hand. The marks are so conspicuous. I sometimes find that I am confronted by them. When I am 60 or 70 years old I worry that I won't be able to get through the skin at all! And the idea that your fingers will be totally covered with callous...'
Some respondents felt obliged to monitor their glucose levels with SMBG. When they decreased the frequency of SMBG, their glucose regulation worsened, and they had a higher risk of developing an unnoticed hypo- or hyperglycaemia. Furthermore, when the readings were not in accordance with the expectations, especially unexpected 'poor' readings, respondents reported feeling frustrated, anxious, ashamed, or helpless. Some respondents felt that they were never free from their diabetes, always feeling that they had to focus on it. According to these respondents SMBG required a lot of organizational effort and interruption of their regular activities. They felt they had to carry a lot of things with them whenever they would go out in order to be able to measure their glucose concentration.
'Always having to think: did I remember this? Did I remember that? My pockets are always stuffed full of all kinds of things. It's annoying. My purse is like a moving van. I can't ever go out with a small neat purse. Not even when I go to the opera house.'
The respondents' perception of SMBG appeared to be a dynamic factor. For example, adjustments in materials e.g. another kind of finger-pricking device, could make blood glucose testing easier and less painful. This led to a more positive perception. The perception of SMBG as a friend or a foe was related, to some extent, to the frequency of measurement. Respondents who perceived SMBG as a foe, did not always measure their blood glucose concentration less often than those who perceived SMBG as a friend, but they did encounter more difficulties with the measurements.
Personal goals: tension between good glycemic control and quality of life
From the interviews, it became clear that the respondents were not only focused on good glycemic control. They were also focused on maintaining their quality of life.
To achieve the desired glycemic control in order to prevent complications, respondents reported that they had to measure their glucose concentrations frequently in order to make the required adjustments in insulin dose, food intake, and lifestyle. Furthermore, these frequent measurements were necessary for the prevention and detection of hypoglycemia.
'My sugar levels are regularly on the low side. If you are tightly controlled, that's what happens. I am hypoglycemic at least once per day. I would rather live this way with a lower average than be hypoglycemic less often with a higher average. I always think that if your levels are high then the disease keeps nibbling pieces off of your blood vessels. It's like a time bomb which you can't give too many chances. The price is that you are then hypoglycemic with some regularity.'
Respondents described their quality of life in terms of maintaining autonomy, living a normal life, enjoying life, not having to always focus on their diabetes, not being considered a patient, and not wanting to be a burden to their relatives. The influence of quality of life on the frequency of SMBG was less clear than the influence of good glycemic control. It depended on how the respondents individually interpreted quality of life. For example, the concept of living a normal life could mean that the respondent did not want to focus exclusively on the diabetes, which would lead to measuring the blood glucose concentrations less often. However, it could also mean that the respondent would measure the blood glucose more frequently in order to keep the diabetes under control so that he/she would be able to do the activities he/she was used to doing.
Many respondents set their own personal target values with the goal of preventing either a hypoglycemia or a hyperglycemia. Many respondents experienced a hypoglycemic state as being quite distressing. They felt that it kept them from living a normal life and from having their diabetes under control. These respondents were willing to accept higher glucose readings. Other respondents primarily wished to prevent a hyperglycemia to prevent complications. They accepted being hypoglycemic more often.
'When I am hypoglycemic, I feel wretched. I even notice that I can become quite aggressive. I don't really have a problem with high sugar levels, but the low ones are quite bothersome. I really try to avoid attacks of hypoglycemia. I become quite anxious about them. You also don't want to get aggressive. It's very unpleasant and actually you totally don't want that.'
Achieving a good quality of life and satisfactory glycemic control were sometimes in alignment with each other. For example, respondents reported feeling better when their glucose levels were better. However, a majority of the respondents experienced tension between achieving both these goals simultaneously. They tended to deliberately make their own choices regarding the goals of SMBG, and tailored their performance of SMBG to these goals. They were aware of the discrepancies between their decisions and the recommendations they had received from their health care providers.
Personal and contextual factors: barriers or facilitators
Personal and contextual factors may act as barriers or facilitators in the performance of SMBG, depending on the respondents' perspective. Furthermore, these factors could result in goal adjustments and a shift in the perception of SMBG rendering it more positive or negative for the patient.
Respondents explained that their performance of SMBG was a result of their personality make-up including such things as perfectionism, being down to earth, or being easily worried. Some respondents reported that these traits were influenced by their upbringing, such as not being allowed to complain. Their personality influenced their goals, their perceptions and their SMBG performance.
'I'm a bit of a perfectionist, and I aim for really good glucose levels. And then I'm really scared that if, one time, I do forget, that my sugar level will shoot up. So then you start self-monitoring again...'
Some respondents mentioned that they had trouble performing SMBG as it forced them to confront and accept their diabetes in a concrete and visible way. One respondent reported that psychological factors played a role, as he did not want to have to make changes in his life or give things up. As a result, he measured his blood glucose less frequently.
Some respondents reported having been depressed. This did not always directly influence their SMBG behaviour, but it did influence the goals surrounding their measurements. They did tend to accept higher glucose concentrations. They strived for keeping control of their diabetes by preventing hypo- and hyperglycemic symptoms. They were not able to strive for optimal glycemic control.
'In that period of depression I was just happy when I felt good and that things were moving again, and that I could do my job again and things like that, and for me that was enough. The diabetes just wasn't that important for me. I actually made the choice to just let it be there for what it was. Not that I became negligent about it, absolutely not, but... well, slowly but surely, as my life got back on track and other things became more normal again, then I could start refocusing on the diabetes.'
Awareness of hypo- and hyperglycemic symptoms
The loss of awareness of hypo and hyperglycemic symptoms acted both as a barrier and a facilitator in the measurement of glucose levels. Some patients reported that they were no longer aware of the symptoms. They found that performing SMBG helped them to prevent and detect any extreme states. In this case the lack of awareness acted as a facilitator.
'It is difficult for me to estimate how high my glucose levels are. Some people do this perfectly, but I definitely cannot. So, I can guess, and just do whatever. But if my estimate is far off, and the level is either much higher or much lower, then it is no good to me. So, I keep measuring five times per day.'
Other respondents reported that they did not have hypo- or hyperglycemic symptoms. They did not feel the need to test because they felt good. These respondents could have no hypoglycemia or hyperglycemia. But it could also be a lack of awareness. Awareness of the symptoms showed a similar duality. There were respondents who used SMBG as a check to confirm their symptoms, where the awareness acted as a facilitator. Other respondents did not need confirmation, because they already felt the symptoms.
'When things are fine in the morning, and I feel good that day, I don't worry about testing. I go with how I'm feeling. And that works for me.'
Knowledge, including misconceptions
According to the respondents, their knowledge regarding self-monitoring had increased as a result of their own experience, education, reading the provided literature, and listening to the anecdotal experiences of other patients. Some respondents reported that the initial phase was of particular importance as it formed the foundation for their goals and perceptions.
'I was told: you can live a normal life with diabetes. That's why I wasn't focused on properly regulating my blood sugar and doing my own monitoring. For me I felt it was a license not to be focused on my diabetes. This effect may persist for a long time.'
It became clear from the interviews that experiential knowledge played an important role in the use of SMBG. Most of the respondents had been using SMBG for a number of years. They felt that they were unique in the way that they reacted to it. They had learned from their experiences and knew what was realistic for them. They did not feel that their results were comparable to others. This could lead to frustration.
'But the stories you hear such as be careful with exercising because your blood sugar can go down as much as one point. Then you'll see that with me, it actually goes up. Everything is different than what I hear. That is also what frustrates me so much. I can't explain it.'
For other respondents this uniqueness led to resignation to their current situation. Better glycemic control was not possible for them.
'The doctor told me: "all right, your glucose concentrations are now between 10 and 15 mmol/l. Just try to get the readings between 6 and 10 or 11. That would be quite an improvement." But that is quite a step forward. Some days everything is going all right and I have good glucose concentrations. But I just accept that this is not always the case. I just know that for me it is difficult to achieve good glycemic control. I do not try to get better readings. It will never be perfect and it is better to accept that.'
There were some respondents who mentioned that they had had misconceptions. For example, what constituted a good value? In almost every public advertisement for a blood glucose meter, a value of approximately 5.8 mmol/l was depicted on the meter. Although other target values had been discussed with the health care provider, several of the respondents reported that they nonetheless wanted to achieve these published values which led to a high frequency of glucose monitoring. They then felt frustrated when they were not able to achieve these results. Others were able adjust their expectations once they had consulted with their health care provider.
Major life-events, such as having a baby, can cause patients to be more concerned about their glycemic control, which in turn leads to a higher frequency of glucose monitoring. Other events, such as a serious illness in the family, can act as distractors from the diabetes, leading to a decreased frequency of monitoring.
The social support desired by many of the respondents was described as 'being concerned without intervening'. Diabetes is part of the respondents' personal lives. They have to deal with it themselves. Because they do not want to burden the people in their social environment, they use SMBG to keep the diabetes under control. They would like support in the form of recognition of the impact of having diabetes and having to perform SMBG. Furthermore, although contact with other patients with diabetes was sometimes found helpful, there were also respondents who did not relate to the perceptions and behaviours experienced by other patients.
Contact with healthcare provider: discrepancies in perspectives
'They really want you to do everything to achieve good glycemic control. The stricter the better. But then I think: That all sounds pretty good on paper, but for me it's like well, ok, you feel better with somewhat higher sugar levels? Yes, actually I do. Well, then I'll do it this way.'
Many respondents reported feeling a certain tension between their goals and perceptions of SMBG and that of their health care providers. According to the respondents, professionals focused more on strict glycemic control, whereas the respondents had to balance glycemic control with their quality of life. Respondents mentioned that professionals could support them in their self-monitoring practices by paying attention to the patients' goals, perceptions, and their readings (not only to HbA1c levels). If the health care professionals were to recognize the uniqueness of the individual patient and tailor the care and the design of glucose regimens to them, the patient would feel better supported.
Some respondents reported feeling ashamed that they did not meet the goals set for them by their health care provider, and that they were obtaining 'poor readings', despite the effort they were putting into it. Sometimes they did not report their results, because they were afraid of the negative response they would receive from the health care provider. Others did not discuss their measurements and did not bring up questions and concerns, as they were afraid that they would have to change their lifestyle as a result. Other respondents claimed to be nonchalant, and accepted that their measurements would not be discussed.
'I'm bad at keeping track. I measure, but I don't keep track. So when I visit the doctor, I come without a record. The doctor only looks at the average values and those are good. Whereas I know, and I think I've mentioned it to the doctor, that it's because of the peaks and valleys that the average ends up good. But nothing was done with this information. Nothing changed until the moment that I, myself, started saying, come on guys, something has to be done. Then things started happening, and they started thinking along with me. Before now, I left things as they were as well. I was pretty nonchalant. I figured, if the average value was good, and I had the feeling that the morning began well, and the evening ended well, everything was okay. If everything was approximately correct, no harm was being done.'
The respondents recognized that they were responsible for their health and for taking care of their diabetes including self-monitoring. Health care providers could, however, provide support, but when the respondents were not satisfied with the delivered care, they seldom discussed it with the health care provider, because they wanted to preserve a positive atmosphere.
Differences between patients with type 1 and type 2 diabetes
There were a number of similarities between the respondents with type 1 and type 2 diabetes, but the emphasis on separate factors was sometimes different.
Respondents with type 2 diabetes were less focused on adjusting the insulin dose. They were more focused on adjusting food intake and their lifestyle, including exercise. Usually, they only changed their insulin dose in consultation with the health care provider. They were more sensitive to the advice of their health care providers, and they were more attentive in general. Furthermore, their glucose monitoring showed more variation in both timing and frequency. They were more likely to report that they wanted to enjoy their lives without having to continually focus on their diabetes. Respondents with type 1 diabetes performed SMBG with greater regularity and an increased frequency when compared to the patients with type 2 diabetes. The diabetes was also more of an integral part of their lives.
Respondents with type 2 diabetes experienced more complications associated with their diabetes, although this did not seem to have a great effect on the frequency with which they monitored their blood glucose. They also experienced more frustration, not understanding unexpected readings when they monitored their blood glucose. Respondents with type 1 diabetes seemed to be more resigned to their glycemic control. Finally, respondents with type 1 diabetes reported more often that they were no longer aware of hypo- and hyperglycemic symptoms. As result, they felt more dependent on SMBG for feedback about the status of their diabetes.