Diabetes Distress From the Patient’s Perspective: Qualitative Themes and Treatment Regimen Differences Among Adults with Type 2 Diabetes

Abstract

Aims

To explore diabetes distress in a sample of adults with type 2 diabetes, treated and not treated with insulin.

Methods

Six focus groups were conducted with 32 adults with type 2 diabetes, divided by treatment regimen (insulin-treated N=15; 67% female; 60% black; 46% Hispanic; M age 54; M HbA1c 73 mmol/mol (8.8%); non-insulin-treated N=17; 53% female; 65% black; 13% Hispanic; M age 58; M HbA1c 55 mmol/mol (7.2%)). A coding team transcribed and analyzed interviews to describe themes. Themes were then compared between groups and with existing diabetes distress measures.

Results

Participants in both groups described a range of sources of diabetes distress, including lack of support/understanding from others, difficulties communicating with providers, and distress from the burden of lifestyle changes. Insulin-treated participants described significant emotional distress related to the burden of their insulin regimen. They were more likely to report physical burden related to diabetes; to describe feeling depressed as a result of diabetes; and to express distress related to challenges with glycemic control. Non-insulin-treated participants were more likely to discuss the burden of comorbid medical illnesses.

Conclusions

Our data generate hypotheses for further study into the emotional burdens of diabetes for insulin-treated adults with type 2 diabetes, and are in line with quantitative research documenting increased diabetes-related distress among insulin-treated individuals. Data describe needs, currently unmet by most models of care, for comprehensive assessment and tailored management of diabetes-related distress.

1. Introduction

Diabetes-related distress – emotional distress related to the burdens of living with diabetes and its management – is common among adults with type 2 diabetes mellitus (Type 2 DM) (1). Diabetes distress encompasses burdens of the intensive self-management regimen, emotional distress, worries about glycemic control, and distress or frustration over not receiving sufficient support from loved ones and providers for managing diabetes (2). A growing body of literature has differentiated diabetes distress from clinical depression, suggesting that diabetes distress is more closely linked to worse illness self-management and treatment outcomes (3–5) and supporting the development of promising interventions for diabetes distress (6,7). This empirical evidence is complemented by in-depth qualitative studies in diabetes that consistently suggest that clinical depression is too narrow of a construct to capture the diverse emotional experiences described by distressed patients (8).

While regimen-related distress is an important aspect of diabetes distress in adults with type 2 diabetes, as measured by existing self-report scales, e.g., Problem Areas in Diabetes (PAID) (2), Diabetes Distress Scale (DDS) (9), few studies have provided for an in-depth exploration of the relationship between the diabetes treatment regimen and the experience of emotional distress. For adults with Type 2 DM, insulin initiation is typically recommended when patients are not meeting glycemic goals with oral medications and lifestyle changes alone (10,11); about 22% of adults with Type 2 DM over the age of 40 are prescribed insulin (12). Type 2 diabetes patients often hold negative attitudes about insulin therapy and are reluctant to begin insulin when indicated (13). Negative attitudes and concerns about potential harms from insulin therapy, including belief in myths that insulin causes complications like blindness, are particularly common among ethnic minorities and those with lower socioeconomic status (13,14). Once prescribed, adherence to insulin therapy also appears to be lower than for oral medications among adults with Type 2 DM (15). Thus, better understanding the distressing aspects of managing diabetes among those treated with insulin may improve the refinement of tailored interventions for diabetes distress and self-management.

Previous quantitative research has suggested that adults with Type 2 DM treated with insulin therapy report significantly more diabetes distress, particularly regimen-related distress, compared to those not prescribed insulin (16,17). A large, population-based U.S. survey found that adults with Type 2 DM treated with insulin had higher rates of major depression than adults with Type 2 DM not prescribed insulin (18). Delahanty and colleagues (16) found that increased diabetes distress in adults with insulin-treated Type 2 DM was primarily explained by increased illness severity, as well as the burden of insulin treatment. In a previous empirical study of adults with Type 2 DM, we observed higher levels of diabetes emotional burden and regimen-related distress in insulin-treated patients and found that, independent of complications and other covariates, insulin treatment was associated with higher levels of diabetes distress among patients with low levels of social support (17). These findings suggest that insulin-treated adults with Type 2 DM are at increased risk for diabetes distress, partly through increased disease burden and possibly due to increased burden of self-management.

The aim of the current study was to use qualitative methods to provide an in-depth exploration of patients’ experience with each of these sources of distress, using focus groups with a diverse sample of adults treated for Type 2 DM, grouped by their treatment regimen (oral medications only vs. regimens that included insulin). The goals of the study were to elicit descriptions of diabetes distress from the perspectives of adults with Type 2 DM and to code and compare the themes represented in these descriptions to explore similarities and differences between the treatment regimen groups.

2. Methods

2.1. Recruitment

Eligible participants were English-speaking adults (over 18) with a self-reported diagnosis of Type 2 DM for a minimum of one year, who were being treated with oral medication for diabetes, and had participated in a larger quantitative study on diabetes self-management and emotional distress. Participants with significant cognitive impairments that could interfere with completing the larger study were ineligible, as were participants with active suicidality. Participants were recruited for the larger study through mailings, direct referrals, clinic screenings and flyers at XXXXX and affiliated primary care clinics in XXXXX serving a predominately urban, ethnic minority population (details in XXXXX, 2014). Those who completed the study received a follow-up call inquiring about participation in a focus group. Quantitative data collected from the larger study included HbA1c via blood draw, and self-reported demographics, number of prescribed medications, years since diagnosis, a self-report battery assessing diabetes distress and other psychosocial issues. The Institutional Review Board at XXXXX approved study procedures. Participants provided informed consent.

2.2. Study visit

Participants came to XXXXX to attend focus groups, conducted by advanced clinical psychology graduate students trained in qualitative research methods. A focus group format was used because groups have the potential to elicit rich data about common experiences between members, which may be less likely to arise through individual interviews (19). Two facilitators co-led each group. Groups were divided by treatment regimen (3 insulin-treated, 3 non-insulin-treated groups); each group had between 3–7 members. Groups lasted between 90 and 120 minutes, and were audiotaped and transcribed. Participants were compensated $25. Recruitment stopped when no new themes arose and theoretical saturation was reached; this occurred with the 5^th and 6^th groups.

2.3. Measures

Participants provided demographic and health information, including length of time since diagnosis, number of medications, and number of diabetes-related complications. They completed the Charlson Comorbidity Index which includes 22 yes/no medical history questions that cover cardiac, vascular, neurologic and other medical comorbidities (20). They also completed the Diabetes Distress Scale (DDS), a 17-item measure assessing the experience of distress associated with diabetes over the past month across four domains: Emotional Burden, Physician-related Distress, Regimen-related Distress, and Interpersonal Distress (9). Clinically meaningful cut-points have been established in adults with Type 2 DM, with a mean score greater than 2.0 indicating moderate distress, and scores greater than or equal to 3.0 indicating high distress (21). The total DDS score had excellent internal reliability in this sample (Cronbach's alpha = .95).

2.4. Data analysis

Qualitative data were analyzed using thematic analysis (22). In the first open-coding phase, three coders (clinical psychology graduate students with qualitative research training) independently read one transcript and highlighted relevant text. The coders then met to create an initial codebook for use as a flexible guide for coding remaining transcripts. The coding team was expanded to include 12 members of our research lab (all clinical health psychology graduate students and a clinical health psychologist). The use of a coding team enabled investigator triangulation to support credibility of the data (23). Members all received coding training. Two to three coders were assigned to each transcript. Each group followed the same process of coding independently, generated additional codes when needed, and met to discuss and resolve discrepancies. Finalized coding of each transcript was entered into NVivo 8 qualitative data analysis software (24). In the last phase, the full team met weekly to develop overarching themes, and to review and refine codes. Insulin and non-insulin groups were coded using the same codebook. An audit trail was kept at each phase to track decision-making and to support dependability of the data (25).

The first goal of qualitative analysis was to characterize themes and sub-themes across the full sample. At the next level, our aim was to identify differences between participants prescribed insulin and those taking only oral medications. Following an example by Garcia et al. (26), we calculated percentages of participants who endorsed each theme and interpreted differences ≥ 20% as substantive. We used chi-square and Student's t-tests to examine quantitative differences between treatment regimen groups.

3. Results

Thirty-two individuals (insulin=15; non-insulin=17) participated (see Table 2). As would be expected, participants on insulin had significantly higher HbA1c levels (p=.02), had diabetes for significantly longer than those on oral medications only (p=.005), and reported more diabetes-related complications (p=.01). No other significant demographic differences were found between treatment groups but more insulin treated patients were Hispanic/Latino, as compared to those taking oral medications. No statistically significant difference was found between the two groups in DDS total scores or subscale scores. However, the DDS total and subscale scores for insulin-treated participants were higher than for those treated with oral medication only (see Table 2). The mean DDS total score for insulin-treated participants fell into the "moderate distress" range while the non-insulin-treated mean fell below the clinically meaningful cut-point.

Table 2.

Participant Characteristics (n = 32)

Variable	Insulin (n=15)	Oral Medication (n=17)	p
Sex (% female)	66.67%	52.94%	.43
Race
Black	75%	64.71%	.13
White	25%	35.29%
Ethnicity
Hispanic	46.15%	13.33%	.06
Non-Hispanic	53.85%	86.67%
Age (years)	53.73 ± 8.37	57.73 ± 9.96	.26
Education			.476
High School	33.3%	23.5%
College	46.7%	70.6%
Graduate School	13.3%	5.9%
Did not report	6.7%	--
Years since diagnosis	17.47±9.23	8.71±6.94	.005
# of medications	6.533±2.97	7.470±4.42	.159
HbA1c (mmol/mol, %)	73±25, 8.83±2.32	55±16, 7.22±1.39	.02
# of diabetes complications	1.28±.33	.92±.22	.01
# of medical comorbidities	4.4±2.53	3.75±2.77	.50
DDS (total score)	2.62±1.31	1.95±1.00	.12
DDS Subscales:
Emotional Burden	2.92±1.66	2.04±1.11	.09
Physician-Related	1.97±1.45	1.41±.88	.20
Regimen-Related	3.16±1.52	2.34±1.32	.11
Interpersonal	2.07±1.63	1.86±1.23	.35

3.1. Themes

Major themes included: self-blame; the burden of making lifestyle changes; medication-related distress; dissatisfaction with diabetes care and providers; distress related to diabetes control; interrelatedness of mood and blood glucose; interpersonal distress and stigma; diabetes-related physical burden; worry/fear about consequences of diabetes; and distress about comorbid medical conditions. The list of codes and differences by treatment regimen are highlighted in Table 3. Sample quotes below are identified by: participant identifier (P), focus group number, whether group members were prescribed insulin. Additional sample quotes illustrating each code are presented in Table 4.

Table 3.

Differences in diabetes distress between insulin-treated and non-insulin-treated participants

Distress Themes	Insulin (%) n=15	Oral Medication (%) n=17	Overall % mentioning theme (n=32)
Self-blame: 'I did this to myself'	7	18	13
Burden of making lifestyle changes
Deprivation/distress about dietary changes	53	47	50
Eating-related stress	14	24	19
Cheating on diet	0	18	9
Weight-related stress	7	11	9
Falling short with recommended exercise	7	24	16
Burden of glucose meter use	20	29	25
Medication-related distress
Burden from number of medications	27	6	16
Concern about medication side-effects	0	18	9
Insulin-specific distress	60	n/a	--
Dissatisfaction with diabetes care
Insurance problems	7	11	9
Problems with medical appointments	33	11	16
Financial burden of diabetes diet & medications	14	6	9
Dissatisfaction with provider communication	40	24	31
Provider-related guilt and avoidance	14	11	13
Distress related to diabetes control	60	24	41
Diabetes leading to depressed mood	33	0	16
Interrelatedness of mood and blood glucose
Blood glucose levels affecting mood	27	11	19
Stress/emotions affecting blood glucose	7	11	9
Mood leading to poor self-care	27	6	16
Glucose meter results affecting mood	14	24	19
Interpersonal Distress
Concealing diabetes & treatment from others	27	11	19
Overbearing support regarding diet	7	18	13
Lack of understanding/support from others	33	24	28
Diabetes-Related Physical Burden
Distress about hypo/hyperglycemia symptoms	46	11	28
Pain/discomfort/neuropathy	33	6	19
Functional limitations	27	6	16
Worry/fear about consequences about diabetes
Worry about losing functioning; amputations	20	11	16
Worry about passing diabetes to family members	14	0	6
Distress about comorbid medical conditions	0	29	16

Major differences between themes (>20%) are in bold

Table 4.

Sample quotes

Theme	Quote
Self Blame: “I did this to myself”	“It [diabetes] could’ve probably been avoided on my behalf. It’s not so much genetics….in the beginning I just thought [diabetes] was punishment for the food choices that I made, being gluttonous and liking to eat, no calorie counting, no sugar content. Like I did it to myself.” (P8, Group 5, Non Insulin)
Burden of Making Lifestyle Changes
Deprivation/distress about dietary changes	“It’s a bit disappointing…when you become diabetic you have to change your whole eating…the sugars, the sodas, drinks… You shouldn’t do this- you know, it’s like you shouldn’t, you shouldn’t, you shouldn’t. If you want to do it right it can be a burden and if you go out with your friends you can’t go to the fast food places ‘cause that’s a death sentence right there.” (P21, Group 5, Non-Insulin)
Eating-related stress	“It's just it’s hard. I feel like you can't win because everything turns to sugar, so I don't know what to eat… I can't win. And everything I like is killing me. And everything I don't eat is still killing me. So, I can't win..so, I just I don't eat.” (P22, Group 2, Insulin)
Cheating on diet	“If I do something that’s enjoyable, that’s pleasurable [to cope with stress], sometimes that can be overeating, unfortunately.” (P15, Group 5, Non-Insulin)
Weight-related stress	“ [The doctor] told me ‘lose some weight, lose some weight.’ Every time I go to [the doctor] my weight is the same or up.” (P10, Group 4, Non-Insulin)
Falling short with recommended exercise	“Exercising. Eating properly is not the problem, sometimes, but the exercise, I can’t get motivated. No motivation really. Joined gyms numerous times, still have a gym membership. And this one is closer than any one has ever been and it’s still…getting the motivation to go exercise and lose the weight, that’s my biggest problem.” (P21, Group 5, Non-Insulin)
Burden of glucose meter use	“There should be a different way because your fingers, it kills, it’s really, after a while, you even have marks on your fingers from doing it because generally I’ll do my fingers, my stick twice a day, but if I find my sugar going too high or after a certain time, I’m doing it every hour, ‘cause I have to see if it goes down.” (P5, Group 1, Insulin)
Medication Related Distress
Burden from number of medications	“Popping the pills bother me too ‘cause it gets to be too much throughout the day. I’m up to 17 pills a day and it’s, it’s really hard for me.” (P23, FG2, Insulin)
Concern about medication side-effects	“I've been on so many pills that have killed other people. So, as soon as I hear about it, I read it in the paper or a magazine or turn on the television, I immediately want to be off that, because I've been on so much medication.” (P6, Group 4, Non-Insulin)
Insulin-specific distress	“I don’t like the insulin. I don’t like pinching every single day ‘cause I get a lot of black and blues. I’d rather pop a pill than do the insulin…For me, insulin is harder because you take it once a day only, but I just don’t like the, the injection. I wish I didn’t have to take it.” (P23, Group 2, Insulin)
Dissatisfaction with Diabetes Care and Providers
Insurance problems	“When I went away last week, I almost didn’t have enough medicine to go with me and the insurance won’t pay. It’s stressful.” (P24, Group 5, Non-Insulin)
Problems with medical appointments	“How do you talk to a provider when they're given 15 minutes to do a consultation on you when you go to the doctor?” (P4, Group 3, Insulin)
Financial burden of diabetes diet & medications	“For me, you gotta think of the cost of these medications. Because while I have health insurance, there's a cost involved in copayments. And each year the amount that they pay becomes less and less and the amount I pay becomes more and more.” (P14, Group 4, Non-Insulin)
Dissatisfaction with provider communication	“Everybody's an individual, you can't treat everybody the same. And that's what basically, to me, doctors do. They treat everybody through the book…To me, it's hard for a doctor to read and tell me what I should do. You have to experience what we've gone through.” (P7, Group 3, Insulin)
Provider-related guilt and avoidance	“And it’s like I’m afraid to go to the endocrinologist because I know he’s going to ask those questions… ‘Well, what has your blood sugar been?’” (P15, Group 5, Non-Insulin)
Distress Related to Diabetes Control	“Why is it going up and down like this? I do a lot of active things, I stay active, I walk, I wait two, three hours until I go to sleep, before I go to sleep so the food don't sit in me. But I don't understand why the sugar count still goes up and down and I'm doing the right things…and that worries me.” (P17, Group 3, Insulin)
Diabetes Leading to Depressed Mood	“I should be a happy person. I have five grandkids, two on the way. I shouldn’t be moping around all depressed. I shouldn’t be taking all these pills. I shouldn’t be taking diabetes needles and stuff. I should be a normal person. But I don’t feel like I’m a normal person.” (P25, Group FG2, Insulin)
Interrelatedness of Mood and Blood Glucose
Blood glucose levels affecting mood	“I don't think I was emotional before I was a diabetic as much. Yeah I did have emotions, I'm a human being. But I became more emotional after I became a diabetic. And it became worse as my diabetes wasn't controlled in the beginning.” (P6, Group 4, Non-Insulin)
Stress/emotions affecting blood glucose	“The emotions, it raises your blood sugar level. So sometimes you have to have your emotions level because anything that goes on inside your body, your sugar, your body reacts to all of that.” (P16, Group 3, Insulin)
Mood leading to poor self-care	“You fall in depression you don't want to do [take medicine, diet, exercise] anything. That's because…you just don't want to do it, it breaks you down, it puts you in a state of mind of not caring.” (P16, Group 3, Insulin)
Glucose meter results affecting mood	“Yeah my emotions go up and down with my sugar, oh yes, they do, ‘cause you know I’m not happy when I see my sugar at 170. It’s not good for my organs.” (P26, Group 6, Non-Insulin)
Interpersonal Distress and Stigma
Concealing diabetes & treatment from others	“At first, I didn’t want no one to know, really, and I would try to hide it. I’ll sneak to the bathroom, you know, just do my finger stick and do my insulin.” (P18, Group 1, Insulin)
Overbearing support regarding diet	“And my daughter, she’s a stickler with my diabetes when I’m there…There’s no junk stuff in there. You can get fruit. Or she’ll fix something for breakfast. It’s got to be little stuff and she’ll monitor what I’m eating. That part, I don’t like. Because she’s very, very stickler at that.” (P5, Group 1, Insulin)
Lack of understanding/support from others	“We had, we just had an all-out argument about this. And I was like, I don't understand a person not understanding me switching the types of food we eat in order to accommodate me living longer. If you're part of my life this should be something you understand.” (P27, Group 4, Non-Insulin)
Diabetes Related Physical Burden
Distress about hypo/hyperglycemia symptoms	“My sugar is too low… And I don’t stay in the house by myself anymore because…I might hit my head or something if I fall because I don’t, I don’t know. I just black out.” (P25, Group FG2, Insulin)
Pain/discomfort/neuropathy	“When you’re a diabetic, it takes a lot more time for anything to heal.” (P5, Group 1, Insulin)
Functional limitations	“That's why it's [diabetes] destroying—I'm not going to say destroying my life, but it has an effect on my life. I’m very brittle. I can be anywhere, up, down, back and forth at any given time. So it's hard for me to go places.” (P16, Group 3, Insulin)
Worry/Fear about Consequences of Diabetes
Worry about losing functioning; amputations	“Knowing if you get your leg cut off, you're not going to be able to walk around the way you used to be.” (P14, Group 4, Non-Insulin)
Fear/worry of passing along diabetes to family	“The only thing I fear is my children having [diabetes]. I just had another baby, and I fear he'll have it.” (P22, Group 2, Insulin)
Distress about Comorbid Medical Conditions	“I’ve had, you know, the chronic back pain from God, how many different accidents. I’ve got to deal with migraine headaches. I’ve had to deal with, until I had my surgery, I had a fibroid.” (P15, Group 5, Non-Insulin)

3.1.1. Self-blame: ‘I did this to myself’

Participants in both treatment groups described experiencing self-blame related to diabetes. One participant described feeling that having diabetes was a “punishment” for poor food choices in the past. Others expressed guilt and anger at themselves for currently eating foods they felt they should not be eating.

“You said the word: failing. It’s touching me too because I think that I’m also failing because when I don’t follow my diet, when I don’t eat right and I know better.” (P1, Group 5, Non-insulin)

“It makes me depressed when I think I'm not doing what I need to do, when I eat the wrong plate of food, ‘look what I did to myself!’ Now, I'm going to feel sick. Sometimes I feel nauseous. I get low in energy and okay, I didn't do it the right way, now look at the outcome.” (P2, Group 3, Insulin)

3.1.2. Burden of making lifestyle changes

Participants in both treatment regimen groups described distress about changing their eating habits and, in particular, deprivation from not being able to eat their favorite foods. In both groups, participants described frustration related to weight management and weight gain, viewed themselves as falling short with recommended exercise, and described emotional distress caused by the burdens of self-monitoring of blood glucose.

"[Checking my blood glucose] is a struggle. You have to stick yourself to take the blood out. I mean, it doesn’t hurt like it’s going to kill you, but it gets a little sore." (P3, Group 2, Insulin)

3.1.3. Medication-related distress

Participants in both groups raised multiple issues related to distress about treatment regimens. Sixty-percent of insulin-treated participants described significant distress related to their insulin regimen and having to inject themselves.

“When I needed to start injecting myself, I had to ask the Lord to give me strength in order to inject myself because when I see myself I used to cry. I got very emotional, distressed.” (P4, Group 3, Insulin)

”Just taking the insulin. Just finding a spot to take it, that’s what bothers me. I just don’t feel like it, I take three needles a day, sometimes four.” (P5, Group 1, Insulin)

Participants on insulin were more likely to endorse distress related to the burden of the number of medications they were prescribed (27% compared to 6% in non-insulin group). The number of medications taken by patients on insulin was somewhat higher, although not significantly so (Insulin: M number of medications=6.53, SD=2.97; Non-insulin: M=7.47, SD=4.42, p=.16).

3.1.4. Dissatisfaction with diabetes care and providers

Participants in both groups shared dissatisfaction related to their communication with providers, though participants on insulin shared somewhat more frequently about distress related to provider communication.

“I just want doctors to be more straight up with us.” (P6, Group 4, Non-Insulin)

“You say something is wrong, they want to write a freaking prescription. Like, come on!” (P3, Group 2, Insulin)

Some participants in both groups described feeling guilty or avoiding interactions with their providers because of feeling that they were not meeting their providers' expectations. However, for both treatment groups, healthcare-related distress was more often related to health care system issues.

Key sources of healthcare-related distress included problems with insurance, and difficulties with medical appointments (e.g. short appointments, long wait times). Participants treated with insulin were more likely to describe problems with medical appointments (33% versus 11% non-insulin), and somewhat more likely to share dissatisfaction related to provider communication.

“You get pushed in, you get pushed out. That's all.” (P7, Group 3, Insulin)

“There’s a lot of people [at the clinic] and there’s a certain amount of time allotted per visit and sometimes things are on the tip of my tongue - I hate to say it but you’re kind of rushed around.” (P8, Group 5, Non-Insulin)

Participants in both groups discussed distress related to financial burden of affording healthier foods and necessary medications.

3.1.5. Distress related to diabetes control

A major source of distress for participants related to their feelings about their glycemic control. They described feeling a lack of control over diabetes and worry about how to modulate blood glucose levels.

“I worry about that change…I'm trying to keep it from going up…but what happens when it goes down? There's not a shot you can take to bring it back up, so it's worry.” (P2, Group 3, Insulin)

“My sugar will go anywhere from 109 to 400 in a matter of 10 minutes. Last night, I went to sleep and it was 396. This morning, it was 62…It’s hard because I don’t know exactly what makes my sugar go as crazy as it does.” (P9, Group 2, Insulin)

Participants on insulin more frequently described distress related to glycemic control (60%) when compared with participants on oral medications (24%). High blood glucose readings added to participants’ stress, particularly when they could not identify anything they had not done to cause the increase.

“I had been going to the hospital because I thought that my meter was wrong, because I kept getting lightheaded and stuff like that, you know. I kept testing myself the test was saying that…I was high. And I said, well I'm doing everything, why is it high?” (P10, Group 4, Non-Insulin)

3.1.6. Diabetes leading to depressed mood

A third of participants on insulin described experiencing depression related to the burden of living with diabetes, a theme not endorsed by participants treated with oral medications.

“At times, diabetes can make you so moody that you’ll not leave the bedroom. You’d rather stay in the bed.” (P11, Group 1, Insulin)

“Diabetes can emotionally put you in a downfall.” (P12, Group 3, Insulin)

3.1.7. Interrelatedness of mood and blood glucose

Participants in both groups described several ways in which they experienced their mood and blood glucose levels as interrelated and influencing each other. Some described how having high or low blood glucose levels could affect their mood.

“…Because when it’s high, sometimes you don’t want to be bothered. You say something to me, I’m ready to cut your head off.” (P13, Group 1, Insulin)

Others discussed how stress and other negative emotions influenced their blood glucose levels.

“You can't allow something to stress you because that will shoot your sugar up.” (P14, Group 4, Non-Insulin)

Further, some participants described how seeing the results from their glucose meter could put them in a good or bad mood depending on whether the result was in range or not.

“If you take that reading and you find that you’re 400 and above or 300, it’s like denial and then it hits you in the face.” (P15, Group 5, Non-Insulin)

Finally, some participants discussed how their negative mood could influence how they take care of their diabetes; this sub-theme was more common among insulin-treated participants (27%), compared with non-insulin-treated participants (6%).

“I get a lot of anxiety attacks, and I have to fight against it because when I get anxiety attacks, I want to afterwards just eat.” (P4, Group 3, Insulin)

“If depression is your big problem you’re not going to go to the next step with your diabetes.” (P21, Group 5, Non-Insulin)

3.1.8. Interpersonal distress and stigma

Participants in both groups described several types of interpersonal distress: insufficient social support, overbearing social support, and actively concealing diabetes and its treatment from others. Participants on insulin were more likely to conceal diabetes and self-management tasks. They were also more likely to report experiencing a lack of understanding from others. However, they were somewhat less likely to discuss overbearing support. Participants prescribed insulin, in particular, described efforts to avoid worrying family members or to avoid stigma related to injecting oneself.

“I grew up in an era where people were shooting drugs. So for me, needles were taboo. I'm supposed to take [insulin] with me. I don't even carry it…I'd rather go home. I don't care if I'm [away from home]. I'll go home to inject myself and go back [out].” (P16, Group 3, Insulin)

“My mother, my father, they don't smoke [or] drink; they're healthy. They're in their 70s and they're not taking medication. For them to see their daughter taking medication and knowing what diabetes does to people, it worries them. I don't want to worry them.” (P2, Group 3, Insulin)

Overbearing support most often came in the form of unwelcome dietary advice.

“I got one coworker [who says], 'You know you're not supposed to have that. Don't give her that.' That's annoying.” (P14, Group 4, Non-Insulin)

3.1.9. Diabetes-related physical burden

Participants described several distressing aspects of diabetes related to physical burden, including experience of diabetes symptoms, complications, disability, and disease progression. Those prescribed insulin were more likely than oral medicine-treated participants to discuss each sub-theme within this category. For example, participants on insulin were more likely to describe experiencing functional limitations of diabetes (27% vs. 6%)

“I was very active. I would like to go bike riding. I used to go hunting. These are things that I don’t do no more…I love to exercise. It’s just I can’t do it, so it makes you depressed.” (P17, Group 3, Insulin)

Participants treated with insulin were also more likely to describe diabetes-related physical pain or discomfort (33% vs. 6%).

“The neuropathy feels like your legs are on fire and your feet are on fire.” (P18, Group 1, Insulin)

Finally, participants treated with insulin were more likely to mention distress related to experiencing symptoms of hypo- or hyperglycemia (46% vs. 11%).

“I went to a party one time and I ate just a small piece of cake. Not the icing on it, just the cake itself. I started to see all these bugs running around me.” (P13, Group 1, Insulin)

“When my sugar is very high, I get bad headaches. That’s a sign for me that I know that my sugar is high. One time I had sugar that was very low and they put me in the hospital.” (P19, Group 1, Insulin)

Responses under this theme describe distress within an explanatory context of increased illness burden and more challenging diabetes self-management. Individuals treated with insulin emphasized these burdens to a greater degree than those treated with oral medications only.

3.1.10. Worry/fear about consequences of diabetes

Participants in both treatment groups shared worries and fears related to long-term negative consequences to themselves and their family members due to having diabetes. Some participants described worry about their actions in the present leading to negative physical consequences later on, such as amputations, nerve damage, and loss of functioning.

“When I eat something right away I worry [that] I'm eating the wrong thing, my sugar's going to be up, I'm hurting myself. What is it doing? Is it causing nerve damage right now? Is it in the future going to do something?” (P2, Group 3, Insulin)

Others expressed fear of passing diabetes on to family members.

“My concern is that if I have diabetes and if I don't learn how to take care of my diabetes, how can I keep my son from getting it? He's at risk for getting it already because he's a little bit obese…and it's genetic.” (P2, Group 3, Insulin)

3.1.11. Distress about comorbid medical conditions

Participants on oral medications were more likely to discuss distress related to the burden from living with medical conditions besides diabetes (29%), a theme that participants treated with insulin did not mention, despite their similar levels of comorbidity (See Table 2).

“I have heart, lung problems, I have circulation problems of the legs. I have arthritis from my neck down to my feet. I've got a lot of other things wrong with me.” (P6, Group 4, Non-Insulin)

“With my Coumadin issue on top of this, I feel isolated. I'm still trying to teach my family and friends what's going on. Because the diabetes, you can only eat certain things. With Coumadin, you basically can't eat nothing.” (P2, Group 4, Non-insulin)

4. Discussion

In this qualitative study of diabetes distress among adults with Type 2 DM treated at a large urban medical center, results showed many overlapping themes of distress across treatment regimens, as well as several important differences. Regardless of their treatment regimen (i.e., included insulin vs. oral diabetes medication only), participants described the emotionally challenging aspects of living with diabetes in terms of interpersonal distress (e.g., overbearing support or lack of understanding/support from others); dissatisfaction with providers; feelings of deprivation and distress related to dietary changes; burdens of glucose meter use; and financial stressors related to diabetes (e.g. insurance problems, affording medications and healthy foods).

Participants treated with insulin had been living with diabetes for a longer period of time, had a greater number of diabetes complications and had worse glycemic control than non-insulin-treated participants. Insulin-treated participants described more distress in certain key areas, including distress specific to insulin injections, as well as distress related to the number of medications they were taking. Insulin-treated participants more often described emotional distress as having a negative influence on their diabetes management. They more often described diabetes as having a causal influence on emotional distress and depression, and more often reported distress specific to the challenges of regulating glycemic control, as compared to those on oral medication regimens. Participants on insulin were more likely than participants on oral medications to describe distress related to functional limitations, and pain and discomfort related to neuropathy. Insulin-treated participants were also more likely to verbalize problems with medical appointments – specifically long wait times and too-brief appointments.

The pattern of these qualitative findings is in line with prior quantitative research describing greater levels of diabetes distress in insulin-treated adults with Type 2 DM, compared with non-insulin-treated adults with Type 2 DM (16,17), as well as findings suggesting that increased distress among these patients is related to length of time living with diabetes and diabetes complications (27). Delahanty et al.’s (16) study found that distress in insulin-treated adults was linked to diabetes illness and treatment burden, and a greater concern about glycemic control. Further, Baek et al. (17) demonstrated that both insulin treatment and presence of diabetes complications were related to diabetes distress, but that insulin treatment was uniquely associated with distress, independent of complications. Still, a greater number of insulin-treated participants in this sample reported at least one complication of diabetes, compared with non-insulin-treated participants. Similarly, insulin-treated adults in our sample reported an overall greater diabetes-specific illness burden as compared to those on oral medications. They not only were living with diabetes for a longer period of time but they also had worse glycemic control and more frequently described diabetes-related physical symptoms and functional limitations. Differences in diabetes distress (DDS) scores between the two treatment groups in our study were not statistically significant, but our qualitative study was not powered to detect such differences. Another interpretation for this difference not reaching significance is that some of the distress captured in our focus groups was not captured by the items of the DDS.

As qualitative methods can be useful for developing, refining and expanding upon existing measurement methods, it is important to note similarities and differences between results from our sample and existing measures of diabetes distress: the Problem Areas in Diabetes (PAID) survey (2), Diabetes Distress Scale (DDS) (9) and DDS for Type 1 DM (DDS-T1) (28). Further, while qualitative methods were used for item generation in existing scales, in-depth qualitative analysis or examination of differences by treatment regimen have not been reported. Similarities between our data and existing measures included dissatisfaction related to provider communication, a theme reflected in the PAID, DDS and DDS-T1. Some aspects of interpersonal distress, in particular related to concealing diabetes and its treatment from others, and experiencing overbearing support, are similar to DDS-T1 items regarding hiding diabetes from others, and feeling that others act like the “diabetes police” (28). Further, participants in our sample expressed distress and discouragement related to glycemic control and reactions to blood glucose levels, a theme also reflected in the DDS-T1’s Powerlessness subscale (28). These similarities suggest that the sources of distress captured by the DDS-T1 may be similar to those experienced by those with Type 2 DM, especially for those on insulin therapy.

New themes also arose in our data that are not captured by existing scales. For example, the PAID, DDS and DDS-T1 do not assess distress focused specifically on the act of injecting oneself with insulin. Additionally, existing scales do not cover diabetes-related physical burden, health care system-related distress (apart from difficulty with providers), nor distress about comorbid medical conditions. In addition, while only the DDS-T1 captures fear of hypoglycemia, our participants shared distress about both highs and lows in their blood glucose levels. These observations may inform further refinement of existing measures and underscore the diverse sources of emotional distress related to diabetes and its management that are commonly experienced by patients.

Our qualitative data also provide a valuable perspective on the question of causal relationships and mechanisms that may link emotional distress and diabetes. Participants sometimes described distress as a consequence of burdens related to compromised health and functioning, as well as those burdens related to a treatment regimen that was often perceived as too demanding. However, they also described their distress as a reflection of social, healthcare system, and interpersonal stressors. They described distress and changes in mood as having a direct impact on their blood sugars, as well as an indirect effect through poor self-care. However, they also emphasized how fluctuations in blood glucose could directly influence their mood states, as well as having an indirect impact through disappointment and self-blame associated with self-monitored blood glucose readings. It is unlikely that a ‘one size fits all’ approach will be successful to these heterogeneous issues, in research or clinical practice settings (29, 30).

Understanding diabetes distress related to insulin treatment could have implications for the assessment and treatment for those with Type 2 DM who are prescribed insulin. Interventions that incorporate attention to diabetes distress with support for insulin treatment have shown promise in decreasing distress experienced by patients. For example, an educational intervention that included support for intensive insulin therapy with attention to diabetes distress and improving self-management strategies was effective at improving glycemic control and reducing diabetes distress (31). The context that individuals use to describe their distress may also help providers to identify and develop treatment plans aimed at reducing treatment burden as diabetes progresses (30). Also, it is noteworthy that non-insulin-treated participants were more likely than insulin-treated participants to discuss the burden of living with other comorbid medical illnesses, while insulin-treated participants were more likely to endorse diabetes-related physical burden. We speculate that individuals not treated with insulin may have been more likely to discuss other medical illnesses because diabetes-related physical burdens may be less salient. The increased diabetes-specific illness burden and diabetes-specific distress among insulin-treated individuals suggest the potential value for interventions targeting distress among insulin-treated patients.

4.1. Limitations

Results should be interpreted in the context of our design. First, qualitative comparisons may not necessarily translate into statistically significant differences in a larger sample. A convenience sample was used based on participation in a larger study and thus our results may not generalize to different demographic groups with Type 2 DM. Highlighted differences point to potential hypotheses to be tested through further investigation rather than definitive conclusions about the differences between the two groups. Second, our use of focus groups may have elicited less depth in our qualitative findings than conducting individual interviews, and social desirability may have influenced how participants responded to questions in the group context; however, our design was based on the expectation that dividing focus group participants by medication regimen would foster cohesion and elicit commonalities and consensus among participants on similar treatment regimens. Furthermore, our study involved interviewing participants at one point in time and the nature and intensity of diabetes distress can vary over time, depending on factors such as treatment regimen changes and onset of complications (27). A systematic review identified changes in beliefs about insulin from before to after starting treatment. For example, fears of weight gain and hypoglycemia decreased following initiation; however, concerns related to insulin-related stigma increased (32). Once started on insulin, people may also experience other negative beliefs related to insulin treatment (i.e. insulin makes life less flexible, increased concern/worry from friends and family) (33). Assessment and treatment of diabetes distress may benefit from further tailoring along the illness trajectory.

4.1.2. Future Directions

This study adds to existing qualitative literature on diabetes and the experience of emotional distress, including depression (8,34) and sheds additional light on the multiple facets of diabetes distress. Much research in distress for insulin-treated adults with Type 2 DM focuses on barriers to insulin initiation (e.g. negative beliefs about insulin; poor health literacy; fear of needles; feelings of failure related to diabetes self-management; plans to increase efforts at lifestyle change; fear of hypoglycemia; and inadequate education and introduction to insulin by healthcare providers) (35). ‘Psychological insulin resistance’ has been shown to prevent both patients and providers from initiating an insulin regimen when medically indicated (36). However, more research is needed that follows the trajectory of distress after insulin is initiated.

Table 1.

Focus Group Questions

What has been hard for you about having diabetes? What have you struggled with? Areas to probe: Medical/self-management (e.g., glucose self-monitoring, taking medications and insulin) Emotional/personal Social (family; fear of poor outcomes based on experience of other people with diabetes) Many people with diabetes find that their emotions affect their diabetes. Do you think your diabetes and emotions are related? How? Areas to probe: Positive emotions? Negative emotions? Do emotions affect diabetes and self-management? If yes, how? Does diabetes affect your mood? If yes, how? Support for emotional aspects of diabetes? From friends, family, health care providers?