The Science of Diabetes Self-Management and Care2023, Vol. 49(1) 23 –34© The Author(s) 2022Article reuse guidelines:sagepub.com/journals-permissionsDOI: 10.1177/26350106221144961journals.sagepub.com/home/tde
Abstract
Purpose: The purpose of this study is to discern the mechanisms that impact diabetes self-management from the perspective of individuals living with diabetes.
Methods: Using a critical realist perspective, this qualitative descriptive study enrolled 54 individuals living with diabetes who had been exposed to diabetes self-management education and support within the previous 3 years. Focus groups were conducted between January and March 2021. Reflexive thematic analysis was used to develop themes and subthemes.
Results: The overarching theme was wrangling diabetes: getting in control. Enablers to getting in control included professional and informal support and constant reassurance that they were on the right track. Individual-level barriers to getting in control included competing priorities, difficult emotions, and financial concerns. Health system barriers included inconsistent messaging from providers, lack of care coordination, and insurance driving treatment decisions. The latent force underlying these barriers was the limited agency individuals with diabetes had in reference to self-management behaviors.
Conclusions: Although the health care system ostensibly wants individuals to be in control of and responsible for managing their diabetes, system-level structures and processes do not allow for some people living with diabetes to effectively self-manage.
Diabetes is the seventh leading cause of death in the United States, and the condition affects over 37 million people.1 A particularly salient focus of treating diabetes is incorporating good self-management practices. Selfmanagement has been defined in a variety of ways2,3 but generally means engaging in self-care activities to improve health status and well-being.4 Having the knowledge, problem-solving and decision-making skills, and the ability to actively collaborate with the health care team are essential components to self-management.5
Research findings generally support that people who engage in diabetes self-management education experience short-term improvement in glycemic control, self-efficacy, and knowledge6 and may experience reduced mortality.7 There are many professional, community-based, and peer support resources available to improve self-management knowledge and skills, which integrate a variety of behavior change constructs from problem-based learning, empowerment theory, self-efficacy theory, motivational interviewing, and self-determination theory.6,8,9 The American Diabetes Association’s (ADA) Standards of Practice guidelines suggest that a person with diabetes should be evaluated for diabetes self-management education and support (DSMES) at diagnosis, annually there-after, and/or when not meeting treatment targets, complicating factors occur, or life transitions occur.5
Despite the breadth and depth of diabetes self-management research, the mechanisms that lead to or impede successful self-management are still unclear. The role of both professional and informal support appears to be essential in managing diabetes. Researchers have described how autonomy support, a construct within self-determination theory, contributes to improved diabetes self-management skills and health outcomes.10 A significant association between social support and self-care practices has also been found.11
Increasing confidence in one’s ability to manage diabetes has also been noted as an essential component.2,12 Individuals with higher self-efficacy in managing diabetes are more likely to engage in those behaviors. For example, a cross-sectional study conducted by Yao et al13 found that self-efficacy was significantly associated with selfmanagement behaviors such as medication adherence, monitoring blood glucose, and engaging in dietary control and physical activity. A systematic review and meta-analysis concluded that individuals with diabetes may benefit from self-efficacy-based diabetes education.14
Most diabetes self-management intervention studies do not include long-term follow-up, and so it remains unclear whether any positive effects are sustained.6 However, a serial cross-section study of a nationally representative sample indicated that there were no improvements in meeting physiologic targets even though over 90% of those newly diagnosed were ostensibly linked to diabetes care.15 Various barriers to realized outcomes have been explored. For example, Peek et al16 categorized self-management barriers according to the World Health Organization’s 5 dimensions of adherence and found that their study population’s barriers included being too busy, strategy was not convenient, did not feel well enough to engage in the strategy, or were too tired/unmotivated. Other researchers have noted that scheduling conflicts, self-expression, and motivation to manage type 2 diabetes were barriers to participation.17 An inability to cope with the disease, or “diabetes overwhelmous,” is also seen as a threat to a person’s self-efficacy in managing.18 Investigators have recognized the physical environment as a barrier to successful management, such as not having a full-service grocery store or a safe place to be physically active nearby, or the lack of DSMES providers.19 Furthermore, Fritz20 highlighted that in order to acquire selfmanagement skills within a socially disadvantaged context, an individual has to continuously negotiate systems of care, disruptions of DSM patterns, and trial-and-error development of self-care knowledge. Specific barriers included poor patient-provider communication, inconsistent providers, and brief office visits.20
In a thematic analysis of patient-centered care within the context of self-management, researchers found that health care providers need to play a more collaborative role in supporting their patients as they negotiate the health care system.21 In a systematic review and qualitative synthesis of patient-provider self-management support interactions, the authors found that professional self-management support is still an authoritative relationship, thus removing control and autonomy from patients.22
To date, examination of most self-management interventions, processes, and barriers has been correlational and predictive in nature. Although behavior change theories are employed, the assumptions underlying those theories are rarely challenged.23 Thus, it is unclear how DSMES manifests into better outcomes and why more robust outcomes from DSMES have yet to be realized. The overall goal of this study was to discern the mechanisms that impact diabetes self-management from the perspective of individuals living with diabetes.
The critical realist perspective is appropriate when studying self-management behaviors because it potentially uncovers the latent forces that drive decision making behavior. As Wilson and McCormack24(p47) suggested, “the key questions that researchers working with a critical realistic perspective ask is, how do certain causal mechanisms . . . operating in particular environments create certain changes.” Reid25 referenced Bhaskar’s conceptualization of critical realism through the use of concentric circles representing the 3 domains of reality. The “empirical” (observation, experience) is the inner-most circle, which is surrounded by the “actual” (events).25 The assumption is that one is not able to observe all dimensions of what actually exists. For example, clinicians, nurses, and diabetes educators can observe or collect data on a patient’s physical activity, diet, and blood glucose levels, but that data does not reflect the entirety of the phenomenon of self-management, and thus no assertions can be made as to the mechanism behind the observed pattern.26 An outer circle of the “real” encapsulates the other two circles in which overt or latent structures, mechanisms, and conventions exist and influence the other 2 domains.25,27 The premise is that unseen but powerful forces—“the real”—influence the actual event—and a person’s experiences of them (Figure 1).
Although an individual living with diabetes may participate in self-management education and have awareness of appropriate self-management behaviors, there are unacknowledged factors that exist, combine together, and exert influence on either actual decisions to engage in behaviors or the outcomes from enacting those behaviors.28 This is conceptually a very different understanding of the world than traditional empirical explanations in which the education or training is provided and the person gains knowledge or skills to enact the prescribed behaviors that then leads to improved health outcomes.
This study was designed as a qualitative descriptive study. Semistructured focus group discussions were conducted between January and March 2021. The first author, a nurse investigator and anthropologist, conducted the focus groups. She was assisted by the second author, a bachelor’s-prepared community health research assistant. The decision to use focus groups instead of interviews was deliberate. Self-management education is based within behavioral theories that rely on support and building self-efficacy, and therefore, a praxis approach could be taken where participants would have the opportunity to share with and learn from one another throughout the conversation. This was particularly important in the winter of 2021 because the world was immersed in the COVID-19 pandemic and people were still largely physically isolated from one another.
The hospital’s Institutional Review Board approved this study (Approval No. 1628191), and all participants provided written, informed consent.
The researchers wanted to engage participants who had attended a diabetes self-management program (DSMP) workshop between 2017 and 2020, had at least 1 visit with a diabetes care and education specialist (DCES) between 2017 and 2020, or had done both. Lists were generated of individuals who had completed the DSMP (N = 248) or had a DCES visit (N = 2382) from the medical record. Participants had to be at least 18 at the time they received the service, be able to speak and understand English, and have had a diagnosis of diabetes in the medical record at the time of service. These lists were cross-referenced so that an individual would be contacted only once. The lists were randomized, and interest letters were serially sent to these identified individuals. Participants were screened and enrolled in the study on a rolling basis until saturation in analysis was reached. A total of 63 individuals consented to participate, of which 54 ended up participating in a focus group.
A brief demographic and health questionnaire that included validated instruments to measure diabetes distress,29 diabetes self-management,30 and patient activation31 was included with the invitation to participate and consent form. Once the consent and questionnaire were completed and returned, the individual signed up for a focus group time that worked for them. Through using a purposeful random sampling frame described previously, enrolled participants had considerable variation in experiences with diabetes, which provides credibility to the study.32
The semistructured focus group guide is found in Table 1. This guide was developed in collaboration with DCESs and lay leaders of the DSMP. Because focus groups are a form of group interview and rely in part on the group interaction to gather data, conversation between group members was encouraged and, in some cases, prompted.33,34 In all, 12 focus groups were conducted via videoconference (due to the COVID-19 public health emergency), reaching 54 participants. It was at this point that recruitment stopped because no new categories were being introduced into the data set. Focus group conversations lasted between 37 and 69 minutes and involved between 2 and 6 participants. At the end of each focus group, participants were asked if they would be willing to participate in a follow-up interview to confirm the researchers’ findings. Of those who responded they would, 5 (~10% of the study population) were contacted. These individuals received the working conceptual map of the findings and their own comments from the focus group. Interviews lasted between 34 and 51 minutes. All focus groups were both audio- and video-recorded. Interviews were audio-recorded. Participants received a $30 gift card for participating in the focus groups; no additional incentive was provided for those who were willing to partake in interviews. Field notes were recorded both during the focus groups by the second author and immediately after each focus group or interview by the first author.
Reflexive thematic analysis as outlined by Braun and Clarke35 was used. The use of thematic analysis was appropriate because its flexibility allowed for creative, reflexive exploration of identifying patterns and constructing themes within a critical realist ontology. Due to its underlying assumptions, the method is also appropriate when only one researcher is involved in the coding, theme generation, and analysis.35
Interviews were transcribed and uploaded into NVivo 11. The first author listened to the audio and/or video recordings while reviewing each transcript to check for accuracy and was responsible for coding the data using an open coding technique.36 Initial categories were developed from these codes (Figure 2). Through an iterative, reflective process of rereading transcripts and sorting codes, themes were developed from the codes. To enhance rigor and credibility, these themes were shared with 5 participants who had volunteered to review their transcripts and the findings. Based on participant feedback, the categories and themes were again revised. Final themes were peer reviewed by the research team.
Most of the participants were female (70.9%), White (94.5%), with a mean age of 61.2 years, and had been diagnosed with type 2 diabetes (79.6%). On average, participants were experiencing moderate levels of diabetes distress. Full demographics can be found in Table 2. Participants all lived either within the hospital’s service area or within an adjacent county at the time that they received the services.
Analysis of the data revealed that the overarching theme was wrangling diabetes. Additional themes including taking responsibility to get in control, enablers to getting in control, and barriers to getting in control.
The ultimate goal for participants was to continue living the highest quality of life possible. As one participant said, “We all just want to feel better, no matter what your A1C is.”
To do this, individuals were constantly attempting to “get in control” of their diabetes. Although some participants expressed being able to maintain a regimented lifestyle and not having too much difficulty, others voiced considerable frustration, particularly regarding the unpredictability of the disease.
But then you get on a trend where you think you’re doing good and all of a sudden it gets out of whack and you start from square one.
My whole day revolves around it. But that’s the only way I can keep steadily low and not yo-yo back and forth which I’m finding out is one of the worse things you can do.
It’s my responsibility. Entwined with the construct of wrangling diabetes was the expectation that doing so was the individual’s responsibility.
Participants recognized they were the ones who were ultimately responsible for their health behaviors and discussed how they had to be engaged and accountable, whether they wanted to or not. Being engaged meant they had to take advantage of the resources available to them.
You use [the resources] you have. Sometimes it’s more than one thing. You know, take pieces, parts that you use and maybe when you put it all together you’re going to be as good as you can be. You might not be perfect, but you’ll be as good as you can be. Or better than before.
Being engaged also meant taking initiative and doing what they felt they needed to do to get in control.
I asked my primary and [she said] you don’t need an endocrinologist. I looked everything up online first and by the end of [the conversation] I talked her into at least connecting me.
A final aspect of taking responsibility was problem solving. A participant described the lengths he went to to secure appropriate testing equipment.
Well, I bought a lancing device at the hospital and that didn’t seem to work, so I bought a lancing device on eBay and so, currently I’m using these lancets that I got from a couple years ago that I just never got around to using. . . . So some of this stuff I have to do on my own.
Support mechanisms. Participants verbalized the importance of consistent support. This support was informational (eg, education by the DCES or sharing among participants in the self-management group), emotional (eg, walking with spouse to encourage physical activity), and tangible (eg, family member helping with insulin dosing and counting carbohydrates). Support came from family members, friends, health care professionals, and diabetes support groups. Family support was seen as essential, and individuals relied on their partners, children, and parents to help them manage.
My husband and I try to walk at least a mile every single day . . . and start off you know, walking to a neighbor’s house and back and keep adding mileage. That’s what my husband does for me. He says “Well can you go to the stop sign now? And can you go past the stop sign?” It makes a difference.
Participants also identified a variety of ways in which health professionals provided support. Meeting one-onone with a DCES provided participants with informational support.
She kept track of my numbers, and we were able to tweak you know what was I eating that time or that made the numbers go up or down . . . being able to talk to somebody that had knowledge was important to me. It helped quite a bit.
Additionally, visiting with a DCES acted as a booster and motivated individuals to continue implementing the desired behaviors.
What we talked about were a lot of things that I really already knew, but wasn’t able to put into effect, but by seeing her it kind of got me going again, you know. At least for a period of time, you know.
Participating in group self-management classes was found to be helpful because they built confidence in one’s ability to manage and allowed for the opportunity to learn from others.
Just being there and hearing the success that other people were having or hearing their failures and listening to why that happens, I think those things were such an encouragement that you just felt more like going home and, “Okay I can do this.”
Requiring reassurance. To achieve the goal of getting in control, participants felt they needed to know they were on the right track. This reassurance was provided by responsive providers and technology.
Providers were able to reassure individuals, and that was important because it gave individuals the motivation and self-efficacy to continue.
They encouraged me. You know, telling me that I was doing well. I appreciate that. I appreciate knowing what they feel about my progress or lack of progress.
[The DCES] gave me the confidence that I could handle things as they came up and I could make small adjustments. Which made me feel really good.
For individuals who had access to a continuous glucose monitor (CGM), the technology was seen as a game changer.
Another thing that’s helped me a lot is the [CGM] because I can constantly keep track of [my blood sugar]. Like I said, mine is all over the place, so being able to keep track even when I’m not checking myself.
The patient portal was also seen as an invaluable tool for communicating with providers to get timely feedback.
The [patient portal] thing is awesome because I keep in touch with [my endocrinology nurse practitioner] constantly. If I have a bad week, I might screenshot my numbers and email them right to her so she can look at them. So that has really helped a lot.
Getting in control assumed some amount of agency or power on the part of the person living with diabetes. Two subthemes were identified in the data that described barriers to getting in control. The first was the individual-level barriers, such as difficult emotions and competing priorities. The second set of barriers concerned the health care system writ large.
Individual-level barriers. Most management of chronic conditions occurs outside the walls of the health care system, and participants had to negotiate the demands of managing their diabetes along with the demands of other aspects of their lives. Allegedly, DSMES helps people living with diabetes to navigate these barriers, but they were still prevalent among the study participants. In addition to conflicting priorities, difficult emotions and cost of managing were two barriers frequently mentioned.
Much of the time that I’ve been diagnosed, I’ve kind of slid [diabetes] to the side thinking I’m busy with other things.
Another participant discussed feeling almost defeated by the condition.
For me, it’s mostly mental. It’s difficult for me to apply things because it’s been so long of having diabetes. It’s almost to the point in my head, like what’s the point of trying new things or being told something because I’m going to have this for the rest of my life, so what’s the point?
Participants also struggled with accessing healthy food. They either did not have the knowledge or time to prepare it or found the cost of healthy food prohibitive.
One of the barriers for me is not knowing how to make healthier foods, so again it’s a convenience thing. It’s just easier to grab something that is already premade.
Health care system barriers. Although participants expressed a desire for reassurance that they were doing the right thing, participants perceived that the health care system was not able to accommodate.
I’m always kind of waiting for that day to come to find out where you stand . . . other than sticking my finger everyday I’m not sure how I was doing and if I was on track. I just wish there was a better way to know what was going on during those 6 months.
Additionally, there did not seem to be a coordinated plan of care for people newly diagnosed. One participant mentioned she first found out she had diabetes when she went to the pharmacy to pick up her prescription and the pharmacist asked if she had any questions. Other participants were curious as to the process of getting follow-up appointments with the DCES.
I just met with her once. She showed me how to use the finger stick thing. And the measuring device, all that and gave me a magazine on what kind of foods to use, but that’s the only contact with her. Can I contact her anytime I want to? Just to chat with her, you know?
Participants also felt there was inconsistent information and could not really get the answers they were looking for.
I always thought the goal was to try to get off the medicine. And I’ve never gotten that support from anybody. And I know a lot of [health professionals] say “no you’re on it for the rest of your life” but I know others who seem to have had some support and they eventually get off of some of it or get it reduced. And I just never had any discussions with the endocrinologist.
A slightly different barrier was that participants did not feel listened to or felt that the plan was not truly developed in partnership.
The last visit I went to [my doctor] said, “You know, you haven’t had good control,” and I said, “No, it was Christmas and I ate things I shouldn’t have.” So he suggested that I double my insulin, but I didn’t actually want to do that. I’d rather take control in other ways than doubling my insulin.
Finally, systemic barriers with insurance companies driving decisions regarding medications and technology was seen as extremely frustrating to patients. One participant explained their experience.
I cannot get a new monitor paid for by my insurance company or Medicare for 5 years. It would be like $500 out of pocket for me to buy it and, um, so, I’m pricking my finger. I was very successful in monitoring my blood sugars when I had the monitor . . . I’m very sorry that I don’t qualify for that right now.
The purpose of this study was to discern the mechanisms that impact diabetes self-management from the perspective of individuals living with diabetes. Using a critical realist framework to guide the study, several themes were constructed.
Participants described the experience of wrangling diabetes. Effective self-management required both professional and informal support and constant reassurance that they were on the right track. They saw these attributes as important mechanisms indicating successful DSMES interventions because it was through these mechanisms that they got in control. The impact of support in achieving self-management goals has been well documented in the literature.9-11 However, the theme of requiring reassurance as a mechanism leading to effective control is less prevalent in the body of research. Antecedents such as establishing a trusting, consistent relationship with health care providers are mentioned,37 but the act of wanting reassurance, either from providers or technology, has not been well established.
Although participants generally found the self-management programs helpful as a means for sharing ideas, becoming reinvigorated about changing behavior, and being held accountable, the program lasted only 6 weeks. Similarly, participants wanted reassurance that they were performing the right behaviors, yet it was difficult to form trusting relationships with their care providers due to not feeling as if they had been heard, inconsistent messaging, turnover in providers, or long periods of time between appointments. This inconsistent messaging from health care providers regarding diabetes self-management has been reported elsewhere.38 A metasynthesis found that both health care professionals and patients considered biopsychosocial care essential, but this approach has not been realized in practice.39 Similar to this study’s findings, patients in that study were asking for new ways to ensure better communication and better coordination of care.
Additionally, decisions made by insurance companies interrupted individuals’ self-management practices, particularly as they pertained to rules regarding payment for medications or the technological tools that participants found helpful. Although cost has been described as a barrier to successful self-management in many studies,40-42 the nuance of insurance companies thwarting self-management efforts has not been well described in the literature.
Despite wanting to get in control of their diabetes, a myriad of social processes were constantly working against the participants in this study. Framing the discussion within Bhaskar’s 3 domains of reality, the participants’ observed or lived experience of self-management is encompassed by the domain of the latent “real”—the structural forces that are rooted in culture, sociopolitical ideology, and systems.
For example, most health promotion and disease prevention interventions are grounded in individual-level behavior change models, a result of the dominance of liberal ideology in Western societies that emphasizes individual self-determination.43 Diabetes self-management is no exception. Patients are being told that changing health behavior is up to them, and yet there is a lack of agency that individuals have in self-managing their diabetes. Francis and colleagues44 described this as “enforced passivity” in their qualitative study on self-management practices in individuals living with multiple comorbidities. “There were multiple examples in the data of participants feeling forced into passivity by a process and system that ostensibly empowered.”44(p165) Similarly, participants in this study voiced their frustration over the lack of control they felt.
Several limitations of this study must be noted. First, the study took place during the height of COVID, and therefore people’s perceptions may have been influenced by their experiences related to the pandemic. Second, most of the study participants were from rural communities in New York State. Although qualitative research is not generalizable, the perspectives shared by these participants may include a uniquely rural perspective. Additional research exploring diabetes self-management mechanisms within the critical realist perspective could be conducted in nonrural settings.
This study provided insight into the latent and overt processes that impact people’s success with diabetes selfmanagement from the ontological standpoint of critical realism. Although participants were able to identify facilitating and inhabiting mechanisms to getting in control of their diabetes, the unspoken contextual element of agency (or lack thereof) limited participants’ ability to achieve that goal. DSMES interventions were helpful, but the impact did not seem to be long-lasting because of the realities and challenges of implementing the learned skills and behaviors in practice. If DSMES interventions and the behaviors they encourage are going to be an effective long-term solution to diabetes treatment, the environment in which these behaviors are implemented must be considered. The ADA endorses person-centered DSMES, suggesting that the “process involves collaborative communication between a healthcare professional and the [person with diabetes] to identify the needs and agree on the [person with diabetes’] preferred educational, coping, and behavioral interventions that will be used”45(p488) However, as evidenced by this study, preferred interventions and strategies are not always within the realm of an individual’s control. There has been a call for more innovative care delivery models to move the body of diabetes self-management research forward.6 Such models must acknowledge and address the impact of limited personal agency held by those living with diabetes. If they fail to do so, any long-term impact of DSMES will ultimately be unrealized.
Kristin Pullyblank https://orcid.org/0000-0003-0200-1333
From Bassett Research Institute Center for Rural Community Health, Bassett Healthcare Network, Cooperstown, New York (Ms Pullyblank, Ms Fink).
Corresponding Author:Kristin Pullyblank, Research Institute Center for Rural Community Health, Bassett Research Institute, One Atwell Road, Cooperstown, New York 13326, USA.Email: kristin.pullyblank@bassett.org
