Self-monitoring of blood glucose in Black Caribbean and South Asian Canadians with non-insulin treated Type 2 diabetes mellitus: a qualitative study of patients’ perspectives

Recruitment and sample

Data collection

Semi-structured interviews were conducted in 2009 and 2010 in English by two research assistants trained in qualitative interviewing at a location convenient for the participant. Interviews were approximately 45 minutes in length, were audio-recorded with participants’ consent, and transcribed verbatim. Participants were asked to complete a demographic questionnaire prior to the interview; however, a few participants did not fully complete it. Participants are identified by ethnicity, gender and number (e.g., CW1 refers to Participant 1, who is a Caribbean women; SAM2 refers to Participant 2, who is a South Asian man).

The interview guide (see next paragraph) that was developed by the research team, and subsequent data analyses were based on the Health Belief Model (HBM), a socio-psychological model that attempts to explain and predict health behaviours [26]. The HBM assumes that a person will take a health-related action if they: 1) feel that a negative health condition can be avoided; 2) expect that they can avoid a negative condition with a recommended action; and 3) believe that they can successfully perform the recommended action. The HBM has six major components: (a) people perceive themselves at risk of a health condition or complication (perceived susceptibility); (b) people perceive that the health condition or complication is serious (perceived severity); (c) people believe that they can avoid a negative condition with a recommended action (perceived benefits); (d) there are few self-identified psychosocial costs and barriers to performing the behavior (perceived barriers); (e) consistent stimuli within the environment promote the recommended behaviour (cues to action); and (f) people have confidence in their ability to successfully perform the recommended action (self-efficacy) [26]. The HBM has been successfully used in previous diabetes research exploring health beliefs [27] among various ethnic groups [28, 29]. Given that SMBG is a health-related action that can potentially help people manage their diabetes to avoid the risk of, or delay, further health complications, the HBM is an appropriate conceptual model to explore the perceived value and practice of SMBG.

Semi-structured interview guide

Probes: (Stress caused by SMBG? Emotions experienced after SMBG? How do you feel about pricking your skin?

Probes: (Any aspect of your life? Perceived barriers? Financial reasons? Lack of family support?)

Probes: (Does s/he answer your questions? Is s/he clear when talking to you about testing?)

Probes: (Examples of readings you have had? What did you think when you got your reading?)

Probes: (Any lifestyle changes or behaviours?)

Probes: (Using your equipment at home?)

Probes: (Does it make it easier? Harder? How so?)

Data analysis

Interview transcripts were kept in password protected and secure hard drives at our research lab throughout all stages of data analysis to ensure confidentiality and data security. Following initial data collection, all identifying information of the participants was removed and objective identifiers were used on the transcripts to ensure anonymity. Interview transcripts were imported into NVivo 8, where thematic networks analysis [30] was used to analyze the interview data. We selected this study technique because there is limited research that has focused on narrative accounts of how men and women perceive and value the use of SMBG in their diabetes self-management.

Our research team was composed of two academic experts in the area of diabetes (EG & EP), two research assistants training in the area of nutrition (MF & AS), one academic expert in psychosocial issues in chronic disease (HB), and one academic expert in mental health and self-concept of illness (EM). To facilitate dependability (analogous to reliability in quantitative research), three authors (EG, MF, AS) open coded transcripts independently, narrowed data into more concise ideas, identified salient quotes or recurrent phrases and discussed their analyses at regular meetings until they reached consensus. Emerging themes were organized using the HBM; thus, deductive data analysis was conducted. Any thematic patterns specific to gender, within and across cultural groups, as well as participants who reported divergent experiences were noted and discussed at research team meetings. Ethics approval for this research study was obtained from Ryerson University Research Ethics Board.

Theme one: perceived severity of diabetes and susceptibility of future complications

All participants expressed the belief that their chances of future diabetes-related complications are high, given the severity of the disease. Recognizing that diabetes is manageable yet progressive, most participants perceived themselves to be susceptible to complications, and all expressed uncertainty about their future health. These findings were evident in the fear that several participants described regarding further complications (i.e., losing their sight or a limb) and of possibly needing insulin injections in the future.

CW3: That I’m gonna go blind, or lose one of my…that I’ll still be able to get around. My nurse told me that the next time I go to my doctor, ask her to send me to an eye specialist to examine my eyes because with the diabetes, it might be bleeding at the back of the eyes or something so, that is scary. Especially to think that you might lose your sight, that definitely is scary. It’s even more scary than losing a limb, because if I lose a foot I can still get around. So that is scary.

However, one woman participant who had been diagnosed with diabetes a year before the interview, had yet to experience symptoms. Being both newly diagnosed and asymptomatic diminished her perception of susceptibility to future complications despite her awareness of the severity of her illness and familiarity with others suffering from diabetes related complications. This participant was also the least likely to practice SMBG (i.e., once a week) among all participants.

SAW7: …and I don’t take it [diabetes] seriously. That’s because, as I told you, I don’t have any physical symptoms. There was nothing much. I’m only at the border line. Nothing’s going to happen to me. I know it’s not true, but I keep telling myself that is not, that nothing will happen to me. Things happen to everybody else, but things are not going to affect me. So it’s a false world we live in. I know I should be taking it seriously.

Theme two: perceived benefits of SMBG

When participants were asked about the benefits of SMBG, they all acknowledged that it is a valuable tool for the general management of diabetes, regardless of how often they practiced. Most used SMBG to gauge and maintain other self-management activities, such as diet, physical activity and taking medications that affect their blood glucose levels.

SAM12: When you see your blood sugar is within normal range, then you don’t feel anything. If it is going up then you have to start thinking, what is wrong – the type of food I’m eating yesterday or the day before – that it is not up to the mark, or I’ve taken some more type of carbohydrate. So then even the knowledge – be careful, it gives you the signal. When you check your blood sugar, you can see the medicine that you are taking is of right doses, the food that you’re taking is also the correct categories. Exercise, oh if I miss my exercise for a day or two, it [glucose level] remains up to 7, 7.5. The day I do my exercise for about say 30 minutes, 20 minutes, the next morning the blood sugar is 6.5, 6.2.

A few men expressed a strong desire to practice SMBG as a way to understand what was physiologically happening within their bodies. As one participant (CM4) described, “If normally, I’m going out, I usually take it [SMBG] to know where I stand, y’understand, it’s very good, like, you’re gonna be out maybe for the day, it’s very good to take it to know where you stand.” An asymptomatic, newly diagnosed man (SAM6) conveyed similar sentiments: “It [SMBG] is important, you know. I just want to know it, I just want to know it, what is the level of my blood sugar. That’s the only thing because, I don’t feel [any symptoms] anything you know.

Other participants considered SMBG to be essential in their daily management. For instance, one participant (CM8) used the phrases “lifeline”, “you’re your own doctor”, and “it’s like a medication, I have to bring [it everywhere]” when describing the need to perform SMBG. Furthermore, blood glucose results within recommended range were described as encouraging and reinforcing self-management:

SAM12: When I see the reading is below 7, what the doctor advised me, I feel happy. I think mentally, I’m not worried about it. I know it [diabetes management] is improving.

SAW11: Like, monitoring helps you. Like if it’s fine, you can…control more. Monitoring is a check and balance. It gives you a check. It encourages… It does encourage me. It lets you know what it [glucose level] is and, if it’s high.

In contrast, one participant (SAW10), despite practicing SMBG twice a week, viewed it as useless, saying that SMBG is “just testing where you are right now. It’s not medicine. It doesn’t motivate you do to anything”. She also viewed SMBG as wasteful and costly, particularly because she believed that she could gauge her blood sugar highs and lows based on bodily cues and symptoms.

Theme three: perceived barriers of SMBG

All participants identified barriers that may inhibit regular SMBG use. Five were noted most often: negative emotional responses to unexpected blood glucose readings, cost, pricking pain, burden of SMBG, and lack of self-discipline/motivation.

First, some participants experienced emotional distress from SMBG readings. As one participant explained, “So why would I just do it and find out, ‘Oh it’s 8 or 9’, and then get depressed. So I wouldn’t. Why would I do it when I know it’s high?” (SAW10). Although SMBG results encouraged individuals to reflect upon their self-care practices, when the readings caused confusion some participants felt frustrated and disheartened:

CW1: Sometimes I feel like giving up, I have to be honest, I feel frustrated or dumb in spirit, you know, at times, because, um, no matter how much I exercise and try to eat right and I take the medication, I get unusual readings sometimes. Because, as I said before, for the first reading of the week it’s good, but after each meal it just escalates. Even if I eat the right, you know, diet or meal – follow the right meal plan, it’s scary sometimes.

Second, the cost of lancets and strips inhibited most participants from regular SMBG. Compared to Caribbean participants, South Asian participants were more vocal about these costs:

SAW10: She [her physician] told me that you should monitor it several times before meals, after meals, before sleeping, getting up, to see a pattern. So, like, the strips are very expensive… That I’m wasting this one, this one dollar is gone. How will I be able to buy more strips? Like, the bundle costs $100 for 100 strips. Then I get lots of resistance from my family. My husband will say, ‘Why are you checking it?’ I don’t know if that is the same issue in his mind too. So, well, it’s not a very enjoyable exercise.

A few participants reported that to reduce the cost, they reused lancets which made lancing their skin much more painful:

CW1: Sometimes I run out of the lancets because I have to pay for them at the pharmacy. And, sometimes, I have to use the same needle over and over again. Whenever I use an old needle it pricks me harder, y’know, it goes down deeper in my skin. It really hurts. And I have to use the rubbing alcohol to massage it as firmly as possible. So I try to make the sacrifice. When I have the money, I try to make the sacrifice. Especially this month I am buying two cases of the lancets so that they last for the rest of the month, because sometimes one package just lasts for a week because of the frequency in which I have to do the testing.

Caribbean participants cited pricking pain as a barrier more often than South Asian participants, as they tended to perform SMBG more frequently. For one participant, pricking was the only reason he avoided SMBG some days:

CM5: Because I’m tired of pricking my fingers. Pricking, pricking, pricking. Sometimes I feel it so, so, you know the nerves are right at the tips of your fingers and your toes there, the nerves are right there, and um I could feel it, it hurts, you know. That’s why I think sometimes, you know, I skip couple of days, two, three days.

Fourth, two South Asian women commented on SMBG being a “hassle”, a technical nuisance: “Besides, the machines are broken, machines, batteries they get expired. And you don’t know how to put the batteries back in. You have to go to a [pharmacy]. It is such a hassle” (SAW10). Another woman emphasized the repetitive burden of SMBG, that she feels is forced upon her, although this burden did not impede regular monitoring:

SAW11: I mean if it’s high today, say 7, 7.7, 7.8, then I see that I change my diet like that for diabetes, then I test the next day as well. A couple of days in a row. I mean, then it bothers you, I mean, testing in a row. Otherwise it’s OK. And within two or three days it comes back to around 7-ish. The idea of, I mean the hassle of, just taking it out of the drawer – that’s, that’s the hassle. That’s the hassle. When there is something you have to do by force, then it’s a hassle.

Fifth, rather than identifying external sources of barriers, two South Asian women internalized their barriers and blamed themselves for not practicing SMBG regularly. One (SAW7) voiced her perceived carelessness: “No, no, it’s not the right attitude, it’s not the right thing, I know it’s not right. I should be monitoring, I should be taking more care of my food habits. I’m just careless about it, I know I’m careless.” Similarly, SAW10 blamed her lack of routine: “I’m not a very regular and organized person, so I’m not taking advantage of it [SMBG]. I should make a routine. I should try to be on time, check it in the morning and then try to act accordingly”.

Theme four: cues to action

The cues to action that participants most often described were support from physicians, family members, and friends. First, most participants said that their physicians regularly talked to them about how often to practice SMBG and gave them log books for recording their blood sugar levels. Physicians also adjusted participants’ treatment regime when their readings were too high. In contrast, a few participants who monitored infrequently (SAW7 and SAW10) did not receive consistent cues for action from their physicians, which may have affected these participants’ practice of SMBG. Indeed, ongoing encouragement from physicians may be necessary to motivate SMBG practice. When there are no physician cues to action, patients may perceive that their physicians do not value SMBG and then perform it less often or not at all. One participant began to doubt the value of SMBG when her physician did not reinforce its practice:

Interviewer: Does she think it is important for you to test?

SAW10: I don’t know. I don’t remember.

Interviewer: Do you get a sense from her?

SAW10: No, because, you know, when we see each other, it is after many months and then for only 5–6 or 7 minutes. She quickly looks at my previous report and then she says you are doing fine, or you are not doing fine, you should exercise, and that’s it. If I trust the doctor, then I wouldn’t do it [SMBG]. I would trust. He or she knows best, so why should I do it [SMBG]? It’s [SMBG] not a very comfortable thing, so why would I do it?

Second, most participants spoke about the prevalence of diabetes in their families and communities. For most participants, having family and friends with diabetes helped them cope with diabetes management. Those who practiced SMBG, particularly Caribbean participants, either received or sought support from family members. However, South Asian women participants reported that they received limited family support. As one participant explained, her husband objected to her testing and appears to deny that she even has diabetes:

SAW10: Like I said… I think I am mentally more busy than I really am. Family, my husband. Family is a demanding situation. It’s a very demanding situation…And, so I am very careful about that. I just do [SMBG] once in the morning sometimes. So that’s one reason. And then I don’t have a support system from my family. So my husband is very, very discouraging, in that he says, ‘You say to yourself you don’t have anything’. But he sees me doing that [SMBG], he gets so upset, he gets really hyper – ‘You don’t have anything’ – and like that [laughs]. So, you know, all these things, they hurt. Like my mom tells me that ‘You should be very careful’ [about diabetes], but I don’t.

Theme five: self-efficacy

The key findings under this theme pertain to the confidence participants expressed in practicing SMBG and strategies for overcoming barriers. First, all participants said that SMBG was easy to do and all felt confident about their ability to use the glucometer, prick themselves and read the results. For instance, when asked whether anything could stop him from using SMBG, one participant responded, “I don’t think anything can stop me. Even if I travelled I can still test it” (CM8). Another said, “I try to test my blood sugar every morning. Even if I go away for a weekend, I take everything with me so I can test. Because I like to know each morning what the reading is” (CW3).

A final important finding was the various strategies participants used to overcome barriers to SMBG. These strategies, which demonstrated participants’ problem-solving skills, included reusing SMBG materials, such as lancets, for financial reasons, and owning backup glucometers in case one provided questionable results.