Self-management Experiences Among Men and Women With Type 2 Diabetes Mellitus

A Qualitative Analysis

Rebecca Mathew; Enza Gucciardi; Margaret De Melo; Paula Barata

Disclosures

BMC Fam Pract. 2012;13(122) 

In This Article

Results

Participant demographics are listed in Table 1. There were a total of 35 participants and the average age was 57 years, with 51% female and 49% male participants. Almost half of the study population achieved some or full completion of high school education (49%), had a family yearly income of below $ 29, 999 (43%) and were married or living with a partner (43%). More than half of the participants (63%) were foreign-born from various ethnic backgrounds. Data analysis yielded five emergent themes addressed by both men and women: identity and disclosure as a person living with diabetes, self-monitoring of blood glucose levels, struggles with diet and nutrition across varying contexts, utilization of diabetes resources and social support. Please see Table 2 for a summary of the gender differences divided by overarching theme.

Identity and Disclosure as a Person Living With Diabetes

Women openly identified themselves to others as having diabetes in contrast to men who often hid their diagnosis in social settings and sometimes kept the diagnosis from family and friends. Among the women's focus groups, sources of public identification, including medical alert bracelets, were discussed and perceived as very useful to have, as it was a clear and easy identifier of their health condition to others. One female participant noted that

"It doesn't hurt to have that little bracelet that says this is one of my problems…I have it in my wallet and it says I'm a diabetes person, I'm unconscious, and it mentioned it [FG5.F6]."

Women also emphasized how their diagnosis was well known to family and friends, who often helped them stay on track with their self-care recommendations. On the other hand, throughout the male focus groups and interviews, no specific public identifiers of diabetes were mentioned, and some men repeatedly discussed worry and anxiety over the thought of family and friends learning about their diabetes:

"In my family, no one knows that I have diabetes…I don't want to let it out. I'm too young, and I don't want to let them know that I'm a diabetic. [I,M8]."

Females' response to initial diagnosis was less dramatic and substantially less focused on thoughts of imminent mortality; women's discussions were more rooted in feelings of sadness and disappointment instead of life threatening sequelae when they were first diagnosed. However, expressions of shame, embarrassment, and imminent thoughts of death upon diagnosis with diabetes were more often noted among men; one man reported:

"So when I was diagnosed with diabetes, I thought I was going to die. [I] thought I was different than the others. I couldn't face people, because I said, 'Oh, this is a terrible sickness! Oh my god, I'm going to die!' [FG1,M5]"

Differences in observance of nutrition self-care practices were particularly apparent in how men and women discussed maintaining diet and lifestyle changes in social settings. When asked how they cope with diet in social settings, one woman said,

"If I go out, and if it's a place I know that has a microwave, I'll bring my own food…and I'll just use their microwave. Even if I have dinner at their place, they'll eat their food, and I'll eat mine. [I,F7]"

The idea of making adjustments in lifestyle to better observe self-care recommendations was consistent across numerous discussions in the women's focus groups and interviews. Women seem much more able to publically identify themselves as having diabetes, and in turn, align their public identities with diabetes self-care behaviors. However, men expressed difficulty in reconciling diabetes with social activities. Some even avoided activities that might tempt them to stray from dietary recommendations. One man reported,

"For the past, let's say 6 months or so, I take it [diabetes self-care] really serious. Places I'm invited to, I don't go… I don't go with my friends to parties. I spend more of my leisure time exercising [alone]. [FG3,M1]"

Men also reported less observance of diabetes self-care recommendations in social situations, such as eating fast food because family or friends typically enjoy it. One man talked about how he strays from self-management when with friends:

"I tend to go away from it [diabetes self-management] on the weekends…Everything…I have a beer here, there, and everywhere else, you know what I mean? I tend to go on a little bit. You know, when we get together. [FG3,M2]"

Both men and women were still readily able to accept their diabetes following an adjustment period after the initial diagnosis; both groups identified the importance of acceptance in obtaining knowledge about the disease and proper management in overcoming fears about their own health.

Self-monitoring of Blood Glucose Levels (SMBG)

Both men and women described their experiences practicing SMBG at home. They repeatedly discussed the importance of body cues in interpreting glucose levels – both hypoglycemic and hyperglycemic episodes. Men linked physical symptoms to fluctuations in blood glucose level. One noted,

I can feel…you know, the level of my blood…when my blood sugar is say, more than acceptable. [FG3,M1]. Furthermore, men and women associated variations in blood-glucose levels to other behaviors, particularly food selection. Participants acknowledged that certain foods caused their blood-glucose level to increase, and described using their blood glucose levels to gauge the impact of certain foods on glycemic control and modified subsequent eating behaviors as a result. Despite being able to link diet with blood glucose variations, both sexes found interpreting and reflecting upon factors that impact their blood sugar readings challenging and counter-intuitive at times. For example, one woman stated that she could,

"Eat half of a fruit, half of one fruit…and it [blood glucose] goes on up. I don't know why. [FG1,F3]."

In another focus group, a male participant expressed his frustration with early morning blood glucose lows:

"I get up in the morning, 3…4.2. Why [does] it drop so much? I don't understand why overnight it drops so much? [FG2,M4]."

We noted two important differences between males and females. Only men described experimenting with diet, exercise, medication, and insulin in response to blood glucose levels. One described how he reduced his required dosage of insulin by exercising:

"I would recommend exercise is maybe the number one part of the medication to diabetes. Let's say that I exercise every evening, or let's say 3 or 4 times [each week]. Like, my medication was cut almost a quarter. Because my sugar will drop all the way down to, even sometimes less than 5…but during the week, like some days when I can't jog, then I have to really rely on the medication. [FG3,M1]"

Another experimented with diet:

"But we have to monitor ourselves and the food that we eat. That's the way I do it. I eat twice a day…so I've learned from that, so I always eat from 12:00 in the afternoon, every day. I adjust myself. [FG1,M1]"

These findings suggest that self-adjustment of prescribed medication regimens based on modifications to diet and physical activity may be a common strategy that men use to self-manage diabetes.

Both sexes described worry, frustration and fear regarding SMBG but the nature of these discussions was qualitatively different. Women's discussion about SMBG focused more on the affective components of SMBG including fears and anxieties associated with monitoring, the fear of needle pricks and the burden of regular testing. For example, one female reported,

"I am afraid of needles. But now I can do it. [FG5, F7]"

In contrast, men focused on the logistics and technical aspects of SMBG, including calibration of blood-glucose monitors, extracting and sizing a blood sample, and using test strips:

"Very often there is wide variation from [one of] my readings to the other. How do you calibrate these darn meters? Every time I buy strips, there is a test strip in there. Now, are you supposed to pick up a solution at the drug store? [FG2,M2]"

Another man discussed blood-sample size and learning with a trial-and-error process:

"One of the other things I found early in this experience is taking a proper sample. Like, when you prick yourself, you just get a little…but it has to be a full blood sample. Cause you get a low reading rate. And you say, 'No no, this is not a good reading sample. Try the other finger.' [FG2,M5]"

These findings demonstrate different aspects of SMBG that are of concern or interest to patients or that are a source of anxiety or fears.

Diet Struggles

Both male and female participants repeatedly voiced struggles with food restriction, moderation and integration of dietary recommendations, but dietary struggles were a much more prominent part of women's self-care behavior. Women demonstrated significant nutrition knowledge gaps and expressed challenges with having to restrict favorite foods. One participant stated,

"It is very hard. It's hard to stay off the sweets…because some people have diabetes, and they don't like sweets. I love sweets! [FG4,F2]."

Another woman said,

"I know what to eat and what not to eat…I have to cut out starch…[It's hard] that you can't eat the things that you usually eat! [I,F9]."

Even when specifically told by their physicians that they could eat anything in moderation, women felt a need to abstain from certain foods in order to achieve optimal control:

"Yes, because the doctor told me I can eat everything, but in small portions. But I still don't eat everything. [FG4,F1]."

A number of other female participants reported difficulties adjusting to appropriate food substitutes and the overall change to their diets: one participant noted that her major difficulty in managing her diabetes was adjusting to not eating as many desserts.

As a consequence of making these dietary changes, many women appear to progress through a period during which they mourn the loss of these foods from their diet. The feelings of loss and difficulty over abstaining from certain foods was especially prominent when participants discussed having to reduce or cut out foods from their specific cultural background:

"It's a little difficult for me to break away from what I'm accustomed to eating…but it's the passion [temptation] of trying to go back [to eating those foods]…it's still there for me to go back. [FG1,F4]."

Moreover, women acknowledged their 'dietary indiscretions' (e.g. eating foods perceived as forbidden) as cheating on their diets. A female participant described one of the difficulties of having diabetes as,

"Not eating cookies or cakes…because I have a sweet tooth, but I cut back on that…once in a while, I do treat myself to a little bit. I cheat. But then I control how much. [I,F4]."

Women seemed to have developed a consensus with others in their focus groups when discussing the behavior of cheating. For example

"…and [I] find out [blood glucose levels are] going up, when I cheat a little, you know…When I see that and I stop cheating <other participants agreeing>…. [FG5,F1]"

To which another woman responded,

"Everybody cheats a bit, you know. [FG5,F4]."

The use of emotionally-charged language and description of dietary deviations as 'cheating' further supports the proposed complex relationship women have with food. Our results demonstrate that women with diabetes feel as though many foods are forbidden, which reveals the importance of emphasizing how to integrate foods into their diet and how to modify traditional cultural recipes so as to enable healthy and balanced approach to managing eating behaviors.

Men did not generally discuss food restriction, but rather discussed moderation and substitutions of foods perceived to be unhealthy. For example, one man discussed a substitution:

"Instead of eating white bread, you're eating whole wheat or seven grain bread. [FG2,M3]"

Another reported,

"…because people love to eat sweets and everything, but I have to give it up. But the good thing about it is…we have Splenda…so if I need any…sweetener or compounds, we use Splenda at home for all the sweets and everything. [I,M8]."

Men also generally described deviating from their diets using less-self-deprecating language. For example,

"I tend to go away from it on the weekends. [FG3,M2]"

Another man said,

"I tend to splurge a little bit. [FG3,M3]"

Contrary to women, the men in this study appear to focus on moderation of foods and use more neutral language to describe nutrition self-care.

Utilization of Diabetes Resources

"Men preferred more self-directed, independent education resources; for example,"
"I've read several books about this… [FG2,M2]"
And,
"Whenever I need some information, I go to all the Internet sites. The Internet… gives me very good material. So with that I manage myself. [I,M8]."

Even when men used more social information sources, they combined them with independent information seeking:

"I went to the Hospital…they gave me a booklet, which is very nice. One about what type of exercises you need to do and what type of diet management you need to do. That gave me a little bit of help…and at the same time, whenever I need some information, I go to all the sites, the Internet. [I,M8]"

In contrast, women tend to use more socially interactive education resources: the DEC, group classes, support groups (i.e., church exercise groups, foot clinics, weight loss programs) and their healthcare teams. For example, one woman discussed those resources that have been most helpful in helping her manage her diabetes:

"…Like talking to other people who have it…I'm in a senior's group and then we have exercise. [I, F9]"

Social Support

Men and women both turn to their family and their physician for practical and moral support. They preferred their physicians to be aware of diabetes services and resources, to be willing to coordinate these resources for them and provide consistent follow-up including glycemic control, medication adjustments, and listening to patient's personal stories. However, we noted differences among men and women in how participants discussed support from their families. Men repeatedly spoke in the plural about diet modifications, for example:

"What we did, from my own experience, is we changed the habits of all the family. [FG1,M5]"

Another man said,

"My wife is the controller in the house…She supports the whole thing, which I find very helpful. She says this is what you're [going to] eat. And it doesn't matter to me, I mean, because I eat anything she gives me. But she is in tune with the regime. This is what you should eat; this is what you shouldn't eat. And you know, if you eat that, then you know what is going to happen. [FG2,M5]"

In contrast, most women did not discuss their spouse as a source of support and often felt the need to change their lifestyles without altering those of their families. One woman described how she balanced her own healthy diet with her family's preferences, as she was the primary person in charge of food preparation for the family:

"I do the cooking, but I make sure when I cook it, it's not going to affect any of us, and it's still tasty whatever way I cook it. So nobody misses what I cook. [I, F4]"

Another woman described how isolating it was to eat foods different from the rest of her family and friends:

"So it's really hard on family and friends with me, I feel like an alien and I can only eat certain types of food…so it's very sad and difficult." [FG5,F5]."

Unlike men who solely discussed their wives as support, women described mixed support from family members, especially other important women in their lives such as daughters, sisters and friends. One woman reported,

"My friends are pretty supportive…when we go out to dinner or something, they say, 'maybe we can share a dessert'…and they remind me, 'maybe you shouldn't have that or whatever'. [I,F10]"

Other female participants emphasized predominantly nagging with regards to their diets from family. For example:

"No, my family is on top of me, don't eat that, don't eat that. If you go on, we will leave you… [FG5,F3]"
And,
"If they [family] see me, you know, eating anything that I know I shouldn't eat, they'll say, 'Well you can't have that,' or something like that, you know. [I,F9]."

Regardless of positive or negative support, women did report influence from a wider group of people in their social support networks.

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