The Science of Diabetes Self-Management and Care2024, Vol. 50(5) 339–351© The Author(s) 2024Article reuse guidelines:sagepub.com/journals-permissionsDOI: 10.1177/26350106241268412journals.sagepub.com/home/tde
AbstractPurpose: The purpose of this study was to explore symptom management experiences among college students with type 1 diabetes mellitus (T1DM). Limited qualitative data using a theoretical framework exist that explore the self-care behavior processes for symptom management.
Methods: A qualitative approach was used for this study. The middle-range theory of self care of chronic illness served as a framework for data collection and analysis procedures. Data collection included distributing a survey to collect participants’ demographic and sociodemographic data and utilizing a semi-structured interview guide to conduct one-on-one interviews with 31 participants. Interviews occurred via Zoom (n = 28) and in person (n = 3). Interview transcripts were uploaded in NVivo for data management. The research team created a codebook using theoretical constructs to assist with thematic analysis. Data are representative of a sample whose characteristics include undergraduate students ages 18 to 23 living with T1DM for 2 years or more who attended large, public, 4-year universities located in the southeastern United States.
Results: Three main themes were created using theoretical constructs: symptom detection experiences, symptom interpretation experiences, and symptom response experiences. Two subthemes were identified for each theme. Participants engaged in symptom management for blood glucose regulation through detecting changes in their blood glucose physiologically and via technology. Additionally, symptom interpretation involved analyzing blood glucose trends and determining common causes of blood glucose changes. Symptom response included immediately addressing hypoglycemia but delayed responses addressing hyperglycemia.
Conclusions: Challenges were present responding to hypoglycemia; therefore, additional research is warranted to improve symptom response skills.
Type 1 diabetes mellitus (T1DM) is an autoimmune condition that inhibits an individual’s pancreas from effectively secreting insulin to regulate their blood glucose.1 Therefore, T1DM is an insulin-dependent condition that requires daily insulin administration to reduce symptoms.2 Symptoms are defined as “a subjective phenomenon regarded by individuals as an indication of a condition departing from normal function, sensation, or appearance or as perceived indicators of change in normal functioning as experienced by patients.”3 Symptoms, such as blood glucose changes, are important to monitor for T1DM management because they provide guidance on the type of behaviors (ie, consuming carbohydrates, administering insulin) that should be performed for blood glucose regulation.4,5 Previous research6,7 has quantitatively examined how symptoms (ie, fatigue) severely impacted older adults living with type 2 diabetes mellitus (T2DM) from engaging in physical activity to regulate their blood glucose. Additionally, a systematic review identified symptoms, such as constant fatigue, sleep disruptions, and difficulties concentrating, impacting quality of life of adults living with T1DM and their ability to engage in symptom management.8
Hypoglycemia awareness (ie, detection of low blood glucose levels) is important for symptom management; however, several studies identified that young adults living with T1DM had impaired hypoglycemia awareness.9,10 One study9 determined 17% of their sample had impaired hypoglycemia awareness, and another study10 also found that 25% of their participants had limited abilities to detect low blood glucose levels. However, a qualitative study11 found that older adults with T1DM exhibited hypoglycemia awareness but that their ability to address their low blood glucose levels was delayed due to impaired concentration, leading to severe hypoglycemia episodes. Although previous studies have quantitatively6,7,9,10 and qualitatively11 explored symptom management among older adults with T2DM and young adults with T1DM, these studies focused on assessing how diabetes symptoms impacted their quality of life and examined hypoglycemia awareness without using a theoretical framework. Additionally, few studies have addressed symptom management from a psychosocial view (ie, cognitive processes and behavioral responses).8,11 Meaning, limited data have been conducted to explain symptom management through self-care processes to understand how individuals living with T1DM detect, interpret, and respond to blood glucose changes, especially among college students with T1DM. Therefore, this present study addressed the gap by qualitatively exploring symptom management experiences among college students living with T1DM using a theoretical framework to further understand the cognitive and behavioral processes performed to regulate their blood glucose levels.
The middle-range theory of self-care of chronic illness was revised to investigate the concept of symptoms and its association with engagement in self-care behaviors for symptom management.12 Self-care behaviors are operationalized as symptom detection, symptom interpretation, and symptom response.12 Symptom detection involves remaining alert to bodily changes (ie, blood glucose), which can represent a change in disease status.4 Symptom interpretation requires understanding the underlying causes (ie, inadequate nutritional consumption, inaccurate insulin administration) that resulted in the development of the detected symptoms (ie, hypoglycemia or hyperglycemia).4 Symptom response pertains to performing self-care behaviors (ie, inject insulin) to reduce disease exacerbations, which can result in minimized symptom burden if appropriate actions are implemented.4 Previous research has not explored engagement in self-care behaviors for symptom management among college students with T1DM using a theoretical framework.13-15 Therefore, the purpose of this qualitative and theoretical study was to explore symptom management experiences among college students with T1DM.
A qualitative, interpretive phenomenological study16 was designed using the middle-range theory of self-care of chronic illness12 (Figure 1). An interpretive phenomenological approach enabled the researchers to explore and understand participants’ symptom management experiences when regulating their blood glucose levels. One research question was utilized to inform this study: “What are college students’ with T1DM experiences engaging in self-care behaviors for symptom management?” Additionally, a theoretical framework provided the research team guidance on specific areas to explore to further understand symptom management. This study received approval from The University of Alabama’s Institutional Review Board (Protocol No. 22-08-5868-R1).
Recruitment occurred November 2022 to January 2023 involving strategies such as utilizing NIH Research Match Services and contacting university disability service offices throughout the southeastern US region, several southeastern Juvenile Diabetes Research Foundation chapters, and a national diabetes organization (eg, College Diabetes Network) to share recruitment material with individuals who fit the inclusion criteria (ie, individuals ages 18-24, living with T1DM for at least 2 years, enrolled in a large, public, 4-year southeastern university). A QR code was located on the recruitment material, which directed potentially eligible participants to answer items such as inclusion criteria, their interview preference, and an open-ended textbox to provide their email address. Eligible participants were contacted by the primary investigator to schedule either a virtual (ie, Zoom) or in-person interview based on the participant’s preference.
Participants (N = 31) were representative of 5 different large, public 4-year universities in the southeastern United States. Mean age was 20.13 years (SD = 1.28), and most participants identified as White (87.1%) and as a woman (58.1%). Additional demographic and sociodemographic details are reported in Table 1.
A Qualtrics survey and a semi-structed interview guide served as data collection tools. The survey contained demographic (ie, age, classification, major, residence, gender/racial identity, years living with T1DM, health insurance, medical supplies) and sociodemographic data (ie, type/location of provider, number of provider visits, level of confidence managing T1DM) items. The semi-structured interview guide (Table 2) contained 12 questions that were created using theoretical constructs; however, data reported in this present study pertain to 3 interview questions. Data regarding other interview questions pertained to exploring disease management experiences17 and examining how barriers and facilitators impacted disease and symptom management18 among college students with T1DM. Findings for this present study focus on symptom management experiences among college students with T1DM.
An informed consent document was discussed with participants prior to data collection, where participants confirmed their agreement to participate in the study and to be audio-recorded for transcription purposes. Once verbal consent was received, the researcher pasted a Zoom link in the chat box for virtual participants (n = 28) and provided an iPad to in-person participants (n = 3) to complete the survey. Immediately following survey completion, interviews were recorded for transcription purposes and transcribed verbatim following the interview. Interviews were conducted from October 2022 to January 2023 and lasted approximately 45 minutes on average.
Initial data analysis procedures included using SPSS (version 28; IBM) to analyze participants’ demographic and sociodemographic data. Transcribed interviews were uploaded to NVivo (QSR International) for data management. The research team developed a theoretically12 informed codebook to assist with analyzing transcripts, and 2 coders practiced coding 2 full transcripts to establish reliability.19 Initial coder agreement was above 90%; therefore, the coders independently coded the remaining transcripts, where final coder agreement ranged from 93% to 97% for each code.19,20 During the coding process, the research team aligned participants’ statements with each code (ie, theoretical construct), and themes were named after each theoretical construct: symptom detection, symptom interpretation, and symptom response. Subthemes were then generated based on the findings analyzed from participants’ statements (Figure 2). The research team followed qualitative protocols to establish trustworthiness for dependability and credibility of the data.20 Dependability was established using an audit trail, which consisted of maintaining a thorough record of data collection and analysis procedures, and credibility was obtained through writing reflective memos that thoroughly interpreted findings.19-23
Three major themes were created based on the theoretical constructs explored in this study and were further explained in 6 subthemes (Table 3).
Participants shared their experiences of how they utilized their symptom detection skills to physiologically become aware of blood glucose changes and relied on technology to support symptom management.
Subtheme 1: physiological awareness of symptoms. Participants used their physiological senses to determine when their blood glucose was out of range. Some college students were able to detect low blood glucose during a short duration of time. One participant stated, “I can definitely tell pretty quickly whenever I’m going low. I can feel a low [blood glucose] probably within like 5 minutes” (Allison). Another participant also reported detecting low blood glucose due to feeling physical and psychological symptoms, “I can catch my lows really quick. I really feel like I’m dying . . . I am sweating and shaking. It’s just the worst feeling in the world. I have vision loss. I start to have major brain fog, I can’t really comprehend what people are saying” (Maggie). Participants were also able to physiologically detect when their blood glucose increased because they experienced irritability, frequent urination, and thirstiness, “I actually get cranky and angry when I am high. I have to use the bathroom a lot when I have a high blood glucose. Um, I also get thirsty when I’m high” (Patrick). This subtheme illustrates that some college students can instantly detect low and high blood glucose by experiencing physical and physiological symptoms.
Subtheme 2: use of technology to detect symptoms. Some college students mentioned delays with detecting hypoglycemia and hyperglycemia when they relied on their physiological senses; therefore, they heavily relied on technology to remain informed about changes in their blood glucose. One participant stated, “I generally pay attention to my CGM [continuous glucose monitor] more often. It’ll take me a while to really recognize a low or high. Most of the time, I’m just paying attention to my CGM to notify me” (Cooper). Another participant who was previously confident in detecting changes in their blood glucose admitted to later experiencing low self-efficacy with detecting blood glucose changes and preferred to rely on technology alerts to remain informed, “I think I used to be a lot more confident with it [detecting lows and highs] but now that I’m so reliant on it [CGM] . . . ummm . . . not very confident at all” (Thomas). This subtheme reveals that some college students prefer to receive technology alerts instead of relying on their physiological senses and how heavy reliance on technology can potentially lower an individual’s self-efficacy with using physiological senses to detect blood glucose changes.
This theme involved participants using technology and reflecting on previous symptoms to interpret the common causes of their blood glucose changes to understand how to sustain appropriate blood glucose levels.
Subtheme 1: use of technology to interpret blood glucose trends. Participants relied on technology such as mobile applications to analyze blood glucose trends to understand what caused their blood glucose to change. One participant utilized multiple mobile applications to interpret their high blood glucose and determined their menstrual cycle was the cause, “I usually look back [on the Dexcom Clarity app] if my blood sugar gets really high, um, sometimes my blood sugars get really high when I’m about to start my period. I’ll look at the Flo app and figure out that’s why” (Samantha). Another participant utilized their medical device using the “activity mode” (ie, records data such as nutritional consumption) feature on their insulin pump and the Dexcom Clarity app simultaneously to interpret their blood glucose trends after eating a meal and on a weekly basis, “I will use it [activity mode setting in insulin pump] to look back and see what certain foods had an effect on my blood sugar. I also use Dexcom Clarity to look and see my patterns. I look at my trends probably once a week” (Sally). The illustrative quotes for this subtheme reveal that participants relied on mobile applications and their medical device features to interpret causes of their blood glucose changing during their menstrual cycle and after nutritional consumption and occasionally monitored blood glucose trends weekly.
Subtheme 2: situational causes of blood glucose changes. Most participants were able to recall common situations (eg, walking to class, engaging in physical activity, or administering too much insulin) that caused their blood glucose to decrease. A participant reported, “It [hypoglycemic episode] can be from overworking myself like physically, uh like, walking too fast to get to class” (John). Another participant shared, “Any type of cardiovascular sort of activity is just rough. Like weight training, I have the worst time because within 5 minutes it’ll [blood glucose] start dropping more than 15 [points] and it doesn’t matter what my blood sugar is at or if I disconnect my insulin” (Austin). Another participant recalled a frightening experience having nocturnal hypoglycemia (ie, low blood glucose that occurs at night that can lead to mortality) due to administering too much insulin earlier in the day, “My blood sugar kept going low. I started freaking out . . . one of the worst feelings in the world. I think it happens when my long-acting insulin is too high” (Joe).
Some college students were also able to interpret the common causes of high blood glucose was from ingesting cough syrup, “If I have a cold or flu, and I don’t take like a cough syrup [sugar free] that isn’t for diabetics then that definitely is going to raise my blood sugar” (Jessica). Not administering enough or forgetting to administer insulin were other reasons for developing high blood glucose, “Like sometimes, I go like high [blood glucose], maybe I didn’t bolus [administer insulin] quite enough, or maybe I’ve like forgotten to bolus” (Cooper). Additionally, other participants stated that fast food, “pizza over time will make your blood sugar increase” (Sydney), and dining hall food, “I consistently would trend higher after lunch while eating in the dining hall, which I found is the main culprit for my high blood sugars during the day” (Seth), were common causes of their high blood glucose levels. This subtheme shows that college students reflected on previous circumstances that commonly caused their blood glucose to change, which helped to interpret what typically caused low and high blood glucose levels.
College students reported that they addressed hypoglycemia promptly, but their response time was delayed addressing hyperglycemia.
Subtheme 1: immediate responses to address hypoglycemia. Most participants were more responsive to addressing hypoglycemia compared to hyperglycemia because hypoglycemia symptoms felt more urgent, “If my blood sugar is going low, that’s even more urgent than the high because when my blood sugar goes high, I’m not at risk of passing out . . . it’s when I’m going low that I’m more at risk of becoming unconscious” (Anna). Although college students responded quickly to hypoglycemia, they reported problems with overeating when addressing low blood glucose, “If my blood sugar does bottom out [goes too low], I’m gonna eat everything I can (laughs) because you gotta get your blood sugar up quick. I (laughs) have a problem with overstuffing myself” (Breonna). Another participant discussed concerns with overeating to address hypoglycemia, “I call it rollercoasting because you go down and then you hit low [blood glucose decreases], and then you eat too much, and you go right back and become high [blood glucose increases]. You do that all day” (Patrick). This subtheme illustrates how proactive participants are about addressing hypoglycemia. However, overeating as a symptom response to low blood glucose levels negatively impacted their ability to regulate their blood glucose.
Subtheme 2: delayed response to address hyperglycemia. Some college students delayed addressing hyperglycemia because their symptoms did not immediately impact their daily activities; therefore, participants mentioned that they would wait until their medical device lowered their blood glucose, “If it’s high, there’s only one thing you can do, just let the pump lower it [blood glucose] and just wait for it [blood glucose] to come down so that you’re not giving yourself too much insulin at one time . . . high blood sugar symptoms are not entirely detrimental” (John). Another participant reported waiting for their medical device to lower their blood glucose but would self-inject insulin if their blood glucose did not lower in a timely manner, “I sometimes have to use a syringe if my blood sugar is way out of range because my Omnipod [medical device] administers insulin slowly over time and if I’m really high . . . 350, 400, and I feel like crap, I’ll pause the insulin that’s being administered on my pump, and just administer the rest of the correction [insulin] that my pump is suggesting via syringe” (Allison). Illustrative quotes reveal that some college students had delayed responses to high blood glucose because hyperglycemia symptoms did not appear to impose on their daily activities; however, some participants were willing to self-administer insulin if their medical device did not lower their blood glucose within a reasonable timespan.
The purpose of this study was to explore symptom management experiences among college students living with T1DM. Participants reported symptom detection experiences, such as being physiologically aware of their symptoms and utilizing technology to detect their symptoms. Previous studies indicate that adolescents and older adults with T1DM experienced hypoglycemia and hyperglycemia unawareness (ie, limited ability to detect symptoms) when relying on their physiological senses.24-26 However, findings from this present study revealed some college students were able to physiologically detect when their blood glucose decreased and increased due to physical symptoms (eg, sweating, irritability) and physiological effects (eg, mental confusion). Although some college students in this study were able to detect hypoglycemia and hyperglycemia without technology (ie, CGM sensor), our participants still used and strongly preferred having access to technology to quickly detect changes in their blood glucose. Similar findings26,27 were present in previous studies among older adults with T1DM using a CGM sensor, where other studies found technology to be useful for promptly detecting hypoglycemia and hyperglycemia among older adults with T1DM.28,29 Until this phenomenon is further explored, endocrinologists and other researchers should examine college students’ symptom detection skills through distributing a questionnaire that examines hypoglycemia and hyperglycemia awareness and providing patient education to teach appropriate symptom detection behaviors.30-32
Symptom interpretation experiences were also explored in this present study, which included interpreting blood glucose trends and recalling situational causes of blood glucose changes. One recent study incorporated computerbased software with colored lines to assist older adults with T1DM and T2DM on how to interpret blood glucose patterns.33 Findings from the present study contribute additional details pertaining to the ways college students with T1DM use other technologies, including mobile applications, such as Flo (ie, track menstrual cycles) and Dexcom Clarity (ie, analyze blood glucose trends), and utilize recorded activities (eg, physical activity, nutritional consumption) in their insulin pump to determine when and why their blood glucose changed.34-36 Regarding common causes of blood glucose changes, previous studies37,38 have reported common causes of low blood glucose among adolescents with T1DM to be improper insulin administration; however, most college students in this present study expressed that walking to class, physical activity, and stress caused hypoglycemia. Additionally, research has shown that hyperglycemia among college students with T1DM is commonly caused by ingesting cough syrup for viral infections (eg, cold, flu), forgetting to administer insulin or not administering enough, and consuming fast food from restaurants and dining halls located on campus.38-40 Although our study identified similar findings, our participants who identified as female also discussed how their menstrual cycle caused hyperglycemia. Therefore, future studies should examine how endocrinologists and diabetes care and education specialists can inform and assist female college students with navigating blood glucose regulation during their menstrual cycle.41
Symptom response experiences were also explored in this study, where college students described a sense of urgency to address hypoglycemia and less urgency associated with hyperglycemia episodes. A previous study reported that older adults with T1DM delayed addressing hypoglycemia due to being distracted by work tasks and were instead more concerned with hyperglycemia because the potential effects (eg, blindness) were dangerous.11 However, findings in this present study showed that college students with T1DM addressed hypoglycemia quickly to avoid experiencing immediate effects (eg, fainting, early mortality). Although college students in this present study responded promptly to hypoglycemia, they admitted to overly consuming food, which led to hyperglycemia and a phenomenon commonly known as “rollercoasting” (ie, blood glucose continually increasing and decreasing).42 Researchers should conduct future studies using measurement tools such as the Hypoglycaemia Problem- Solving Scale43 to determine college students’ confidence utilizing symptom response skills to address hypoglycemia proficiently. Additionally, previous research44 among older adults with T2DM and findings from this present study with college students showed various age groups with T1DM and T2DM exhibited delayed responses to hyperglycemia. Although findings from our study revealed that college students with T1DM delayed responding to hyperglycemia because symptoms did not impact their daily activities and they did not want to overcorrect with improper insulin administration, future studies should further explore the response time of addressing hyperglycemia to avoid development of additional chronic health conditions (eg, heart disease, kidney damage) later in life.45,46
This study is not without limitations. One limitation was due to the sample recruited for the study. Data presented in this study are based on 31 perspectives among college students who attended 5 large, public 4-year universities located in the southeastern United States. Therefore, their experiences may be different compared to other college students living with T1DM who attend 2-year colleges and 4-year universities in other regions. More research is needed to explore symptom management experiences among college students with T1DM who attend 2-year colleges and 4-year universities in other regions.47-50 Also, interpretation of findings could vary from other researchers.
Our study used a theoretical framework to understand T1DM self-care behavior processes related to symptom management experiences among college students. To the authors’ knowledge, no qualitative studies have used the middle-range theory of self-care of chronic illness to explore this phenomenon among college students living with T1DM.12 Therefore, findings from this study contribute to the literature by providing additional information about symptom management, which further explains the theoretical constructs. Results from this study also inform endocrinologists and diabetes care and education specialists ways that they can measure and improve symptom management for college students living with T1DM. Additionally, findings from this study provide insight about college students’ living with T1DM cognitive and behavioral processes that occur for regulating their blood glucose levels, which can be useful for health education and promotion specialists to consider when creating future symptom management trainings for other college students with T1DM.
The authors would like to thank the participants for sharing their experiences managing type 1 diabetes mellitus as full-time college students. This study was presented in part at the American Public Health Association (APHA 2023) Annual Conference; November 14, 2023; Atlanta, Georgia.
The authors have no conflicts of interest to report.
This research received funding from The University of Alabama to compensate participants for being interviewed.
Ny’Nika T. McFadden https://orcid.org/0000-0002-9503-5374
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From Department of Health and Human Performance, Texas State University, San Marcos, Texas (Dr McFadden); Department of Health Science, The University of Alabama, Tuscaloosa, Alabama (Dr Wilkerson, Dr Chaney, Dr Stellefson); Mayo Clinic, Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery, Rochester, Minnesota (Dr Carmack); Department of Family and Community Medicine, The University of Alabama at Birmingham, Birmingham, Alabama (Dr Jaiswal); and Department of Health, Human Performance and Recreation, University of Arkansas, Fayetteville, Arkansas (Ms Lovett).
Corresponding Author:Ny’Nika T. McFadden, Department of Health and Human Performance, Texas State University, 601 University Drive, San Marcos, TX 78666, USA.Email: tmj92@txstate.edu