Barriers and Facilitators Impacting Disease and Symptom Management Among College Students With Type 1 Diabetes: A Qualitative Study

Abstract

Purpose

This study aimed to explore barriers and facilitators impacting disease and symptom management among college students living with Type 1 Diabetes (T1D).

Design

A qualitative, phenomenological approach using semi-structured, one-on-one interviews.

Setting

Interviews conducted on Zoom (n = 28) and in-person (n = 3).

Participants

Purposive sample of 31 college students living with T1D for at least 2 years who attended large, 4-year public universities in the Southeastern United States.

Method

This study was theoretically informed using the Middle-Range Theory of Self-Care of Chronic Illness Integration of Symptoms to develop interview questions. Interviews were transcribed verbatim and uploaded in NVivo. Data were analyzed thematically using a codebook developed by the research team using the theory as a framework. Trustworthiness was established using an audit trail, memos, and negative case analysis.

Results

Four themes described barriers: diabetes burnout, challenges adjusting to a college lifestyle, difficulty receiving medical supplies, and insurance limitations. Five themes explained facilitators: years of experience managing T1D, tangible support with medical supplies, informational support for disease management, and emotional/technological support for disease and symptom management.

Conclusion

Barriers and facilitators in this study should be addressed in future T1D interventions for college students. Findings can also guide healthcare professionals, health promotion practitioners, family, friends, and significant others on how to better support college students as they manage T1D.

Keywords

disease management type 1 diabetes college students qualitative research

Purpose

Type 1 Diabetes (T1D) is an autoimmune condition that develops from an impaired pancreas that either does not secrete insulin or secretes a minimum amount.¹ Although T1D is typically diagnosed during childhood,² more than half of newly diagnosed cases are adults.³ College students, an important subpopulation of adults, experience challenges managing T1D, including inconsistent self-management, stigma from peers, and limited advice on managing T1D.⁴ A recent study revealed that 70% of college students with T1D experienced moderate stress managing their chronic health condition.⁵ Additionally, research has shown that over half of freshmen struggle to manage T1D in college, and college students frequently experience hypoglycemia episodes (ie, low blood sugar).⁶

Previously reported barriers to T1D management for college students that cause hypoglycemia include alcohol consumption and physical activity.⁷ Alcohol consumption⁸ and physical activity⁹ can cause short-term dangerous effects such as cognitive and vision impairment, and instant mortality, if hypoglycemia was not treated in a timely manner through consuming carbohydrates. However, overly consuming carbohydrates has also caused another barrier called hyperglycemia (ie, high blood sugar) among college students with T1D.⁶ Hyperglycemia causes temporary effects such as a headache and fatigue, and prolonged difficulties with high blood sugar leads to an increased A1c (ie, measurement of average blood sugar during the past 3 months).^1,3 Findings from a national study revealed that 44% of college students living with T1D reported having a higher A1c level compared to when they were managing T1D during high school.⁶ An elevated A1c level can cause additional chronic health conditions including heart disease, kidney disease, and vision loss.¹ Additionally, a recent systematic review⁴ reported that college students faced other barriers, such as limited access to diabetes team compared to high school (eg, inability to travel to hometown provider) and difficulty adjusting T1D management during stressful situations in college.

Although barriers have been experienced among college students, this subpopulation has also reported that they implemented strategies to serve as facilitators for T1D management, which included monitoring alcohol consumption, discussing emergency plans with friends and roommates if their blood sugar went out of range, and seeking resources from their diabetes team when they struggled to regulate their blood sugar.^4,7,10 Previous studies have also reported social support^11-13 and technology¹⁰ as facilitators for management among college students. Findings from previous research about facilitators and barriers that impact college students’ T1D management enables other researchers and practitioners to understand what disinhibits and inhibits management; however, limited use of theory in qualitative studies may have caused other researchers to overlook important factors. Therefore, this qualitative study used a theoretical framework¹⁴ to further explore barriers and facilitators proposed by theory developers as factors that affect self-care among individuals living with chronic health conditions. The Middle-Range Theory of Self-Care of Chronic Illness Integration of Symptoms¹⁴ served as our theoretical framework, where the findings in this present study specifically focuses on explaining how the concepts associated with the theoretical construct, factors that affect self-care impact disease and symptom management. Concepts¹⁴ discussed in this present study include motivation, habits, access to care, experience and skill, and support from others, and how these factors impact disease and symptom management among college students living with T1D.

The previously mentioned concepts associated with the construct, factors affecting self-care in the Middle-Range Theory of Self-Care of Chronic Illness Integration of Symptoms¹⁴ can explain how factors impact disease and symptom management among college students living with T1D. Disease management is the ability to sustain self-care behaviors to remain healthy, and symptom management involves minimizing actively present symptoms to avoid experiencing dangerous effects, such as hypoglycemia and hyperglycemia. The developers of the proposed theory¹⁴ used in this study assume that the concepts, motivation, habits, access to care, experience and skill, and support from others can either disinhibit or inhibit the ability to engage in self-care behaviors necessary for disease and symptom management. However, this theory has not been qualitatively explored to further define and describe how these concepts can negatively and positively impact disease and symptom management among college students living with T1D. Therefore, this present study used a qualitative approach to provide in-depth details about the relationship between the concepts from the theory and how they impact disease and symptom management.

The proposed theory¹⁴ has been used quantitatively with older populations who have Type 2 Diabetes (T2D)¹⁵ and older adults with T1D,¹⁶ where findings from both studies revealed that interventions are needed for sustaining engagement in self-care behaviors. A recent qualitative study¹⁷ has also used this theory as a framework for older adults with T2D, where facilitators for T2D management included alternative food items, routine engagement in self-care behaviors, and social support. This current study addresses a gap in the literature by explaining how the concepts, motivation, habits, access to care, experience and skill, and support from others negatively and positively impact the ability of college students living with T1D to engage in self-care behaviors for disease and symptom management. Findings from this study can assist healthcare professionals and health promotion specialists in identifying potential strategies to improve T1D self-management among college students.

Design

A qualitative, phenomenological study¹⁸ was designed using the Middle-Range Theory of Self-Care of Chronic Illness Integration of Symptoms¹⁴ (Figure 1). A phenomenological approach enabled the researchers to explore and understand participants’ experiences managing T1D. This study received approval from the university’s Institutional Review Board (Protocol #22-08-5868-R1).

Figure 1.

Middle-range theory of self-care of chronic illness integration of symptoms.¹⁴

Setting

A total of 31 one-on-one, semi-structured interviews were conducted virtually over Zoom videoconferencing software (n = 28) or in-person (n = 3). Participants were allowed to select if they preferred to be interviewed virtually or in-person. Interviews ranged from 30 to 120 minutes in duration. The average length of time for interviews was 45 minutes. Interview duration varied because some participants lived longer with T1D, and other participants also endured more challenges with their disease and symptom management. Therefore, living with T1D for years and experiencing substantial challenges with T1D management led participants to share more in-depth details during their interview.

Participants

A purposive sampling strategy¹⁹ was implemented to recruit college students (18-24 years) living with T1D for at least 2 years or more and currently enrolled as a full-time college student. Participants were recruited from large, public 4-year universities in the Southeastern United States (US) from November 2022 to January 2023. Recruitment strategies included emailing university disability service offices throughout the Southeastern US region and national diabetes organizations (eg, College Diabetes Network) to request that the organizations share the study recruitment information through social media outlets and listservs. Additionally, emails were sent to individual university listservs, and NIH Research Match services were also utilized to aid in recruitment.

Method

Data Collection

A research team member discussed informed consent with the participants prior to data collection. Data collection involved distribution of a demographic survey and completion of a one-on-one interview. The demographic survey was distributed via Qualtrics^TM and assessed items such as the participants’ age, year in school, academic major, gender identity, race and ethnicity, health insurance status, access to diabetes supplies/frequency of endocrinologist visits, and location of provider. Zoom participants completed the survey prior to the interview using their personal device and in-person participants were provided a tablet by the researcher to complete the survey. The one-on-one interview began immediately following completion of the demographic survey. Our semi-structured interview guide consisted of primary (ie, structured questions) and secondary (ie, unstructured) questions. Interview guide questions included, Explain what prevents/hinders you from engaging in self-care behaviors to manage Type 1 Diabetes and Explain what helps you to engage in self-care behaviors to manage Type 1 Diabetes. Two college-age individuals living with T1D were informants by assessing the research material prior to data collection, and modifications based on the informants’ feedback were made to the materials.

Data Analysis

Demographic data were analyzed using descriptive statistics in SPSS (Version 28; IBM). Interviews were audio recorded and transcribed verbatim using a transcription pedal, and two research team members listened to a subset of transcripts to ensure accuracy. Transcripts were uploaded into NVivo (QSR International) for data management purposes. The research team created a codebook that contained codes named after the concepts (eg, support from others, access to care) from the theoretical construct factors affecting self-care to assist with qualitative data analysis. Initial data analysis procedures included three researchers (NM, KL, AW) meeting to discuss the codebook and appropriate coding procedures. Then, two coders (NM, KL) coded two full transcripts together to practice with the codebook to establish reliability. The coders discussed discrepancies and codebook changes were made accordingly. The two coders later independently coded four transcripts and scheduled another meeting with an additional researcher (AW) to examine and discuss intercoder reliability. Initial coder agreement was above 90% for each code when examining percent agreement; therefore, the two coders (NM, KL) coded the remaining transcripts independently. The final coder agreement for the codes ranged from 85% to 98%, which is satisfactory based on qualitative experts’ suggestions to have an average agreement of 85% or higher.²⁰

Following coding, a thematic analysis was used to identify, analyze, and report patterns in the data.²⁰ Two themes, barriers impacting disease and symptom management and facilitators impacting disease and symptom management, were created based on the assumption proposed by theory¹⁴ developers that the concepts associated with the theoretical construct, factors affecting self-care disinhibit or inhibit disease and symptom management. Subthemes (eg, diabetes burnout, years of experience) were created after conducting an analysis of participants’ statements in the interview transcripts, where they shared the factors that negatively and positively impacted their disease and symptom management. Thematic analysis concluded by aligning concepts (eg, motivation, experience and skill) with subthemes (eg, diabetes burnout, years of experience) to provide in-depth details about how the factors disinhibited or inhibited disease and symptom management (Figure 2). Additionally, the researchers established trustworthiness as advised by qualitative experts to ensure findings would be dependable and credible.²¹ Dependability was secured through conducting an audit trail by maintaining a thorough record of data collection and analysis procedures,²² and credibility was established by the researchers writing reflective memos to interpret findings during data analysis.²³ Negative case analysis was also performed by interpreting findings shared by a few participants that would typically be called outliers and removed in quantitative research.²⁴

Figure 2.

Visual Depiction of Thematic Analysis.

Results

Participants’ (n = 31) demographic data are presented in Table 1. Mean age was 20.13 years (SD = 1.28), most self-identified as White (n = 27; 87.1%), and a majority identified as women (n = 18; 58.1%). Mean time living with T1D was 7.94 (SD = 1.29) years.

Table 1.

Demographic Characteristics of the Participants (n = 31).

Demographic Characteristic	n (%)	M (SD)
Age		20.13 (1.28)
18	4 (12.9%)
19	6 (19.4%)
20	7 (22.6%)
21	11 (35.5%)
22	2 (6.5%)
23	1 (3.1%)
Academic classification
Freshmen	5 (16.1%)
Sophomore	7 (22.6%)
Junior	9 (29.0%)
Senior	10 (32.3%)
Racial/Ethnic identity
White	27 (87.1%)
Other (Asian, Black, or Hispanic)	4 (12.9%)
Gender identity
Woman	18 (58.1%)
Man	13 (41.9%)
Residence
Campus or University Housing	15 (48.4%)
Off-Campus or other Non-University Housing	11 (35.5%)
Parent/Guardian/Family Member’s home	3 (9.7%)
Other	2 (6.4%)
Academic major
Business (eg, accounting, marketing)	6 (19.4%)
Health professions (eg, nursing, public health)	6 (19.4%)
Science and mathematics (eg, engineering, math)	13 (41.8%)
Social sciences (eg, education, psychology)	6 (19.4%)
Primary source of health insurance
Covered by Parent/Guardian’s health insurance plan	29 (93.5%)
Other insurance Plan(s)	2 (6.5%)

Frequencies represent the valid percent. Participants were not required to answer all survey items. Some participants selected to not report demographic characteristic(s).

The research team identified prominent factors (ie, subthemes) that impacted college students’ disease and symptom management. Table 2 includes the subtheme name, definition, and illustrative quote.

Table 2.

Theoretical Construct and Concepts Aligned With Emerging Subthemes, Subtheme Definitions, and Illustrative Quotes.

Factors Affecting Self-care Behaviors	Subtheme	Subtheme Definition	Illustrative Quote
Motivation (barrier)	Diabetes Burnout	Mental health exhaustion from having to manage T1D	Matt: Sort of like dealing with this illness for so long, I just kind of got sick of it. Um, there were points where I would like not be bolusing right before I was eating. I was just like, I can correct my high later. Just very negligent with my care because it’s just a lot to handle, especially after all those years of doing the same things every day.
Habits (barrier)	College Lifestyle	Difficulty managing T1D due to the college lifestyle such as challenges adjusting from high school to college and having a busy class schedule consisting of a heavier course load	Ellen: Another big transition was also just like the lack of structure um that comes with like the change from high school to college. Um, so like with high school, I had like the same schedule every single day. Um and with college, it’s different every day, and like, you might have like some classes that like, for example, I have like labs that are like 3 to 4 hours like it’s just a lot different, and it um kind of varies day to day. Um, so taking care of blood sugar, and like keeping track of how I was feeling, and that kind of stuff is definitely like a big learning curve.
Access to care (barrier)	Difficulty Receiving Medical Supplies	Challenges with receiving medical supplies from suppliers, providers, and from home as a college student	Anna: The people who send me my CGM and pump supplies. I don’t want to say they’re awful, but they’re kind of awful (laughs). They’re really bad at getting deliveries out on time, which isn’t a problem for my pump supplies. However, it is a problem for my sensors because with Dexcom you can only use it for 10 days, and then it shuts off. So, I have to have a new 1 every 10 days, which is a problem when they keep getting the deliveries in late, and then I have 2 – 3 days to finger stick myself, which is a lot more inconvenient and a lot less um accurate of keeping track of where my blood sugar is going. It gets really frustrating to have to deal with these people every 2 months to get my supplies, and they never come in on time. That probably inhibits me the most.
Access to care (barrier)	Insurance Limitations	Concerns with insurance limitations on ordering supplies, seeking medical care from provider as an out of state student, and expensive medical supplies	Rosie: It’s not like a pill, where I’m just taking exactly 1 every day. It varies so much. And even if I try to give myself room when I’m seeing the doctor, and I’m like, hey, can you prescribe me, you know? Say I take the same amount of units of insulin a day, half the time it’s like, oh, actually that wasn’t enough. You know a vial went bad or you know something went wrong, and insurance companies are just so uh inflexible about it.
Experience and skill (facilitator)	Years of Experience	Managing T1D as a full-time college student did not seem as overwhelming since participants lived with T1D for years and had experience managing prior to college	James: Hmm, it could be interesting at times. Uh, I definitely think there could be a learning curve if you are more newly diagnosed uh coming into college. Fortunately, I was diagnosed 11 years ago. So, I had um a pretty good grasp on how diabetes works and what to do before I got here.
Support from others (facilitator)	Tangible Support with Supplies	Support to aid with T1D disease and symptom management by receiving and offering medical supplies within the diabetes community when supplies are defected, limited, or late to arrive	Breonna: Um, I would say my support system, though, as far as like friends, as far as College Diabetes Network like that’s a really big help for me. Um, sometimes my pump supplies or my insulin doesn’t come in on time, so I can ask them for help. I’ll give them a vial and they’ll give me a vial when they get it back, you know, and vice versa. So, that’s very helpful in that aspect.
Support from others (facilitator)	Emotional Support for Disease and Symptom Management	Empathy and social support provided by friends, family, and members of the diabetes community	Joe: I attended a meeting um my freshmen year with the diabetes group on campus. It was like a really great experience for me because I guess I’ve never really had um the experience of like being in a room with like 15 other people who had Type 1 Diabetes. We were all just like discussing how it sucks. The group was actually a great way to find out like strategies for actually dealing with problems and problems you might encounter.
Support from others (facilitator)	Informational Support for Disease Management	Information (eg, send alerts about blood glucose changing, advice on managing T1D) offered by family, friends, romantic partner, and diabetes community to assist with T1D disease management	Rosie: My dad has access to my numbers through the sharing feature in the Dexcom app. So, if it’s the middle of the night, my blood sugar is going low, and it’s not coming up, then he’ll call me because occasionally I do sleep through it or like kind of half wake up and not really cognizant. It’s very helpful because sometimes I wake up, but I have had times where like I almost slept through a nighttime low and my dad called me but I didn’t answer so he eventually called the police and they knocked on the door to wake me up…which was scary.
Access to care (facilitator)	Technology Assistance for Disease and Symptom Management	Support from medical devices and mobile apps to assist with detecting and interpreting blood glucose changes for T1D disease and symptom management	Allison: I like the Dexcom Clarity app. It’s an app that tracks patterns on the um Dexcom and I like to look at it [blood sugar trends] every few days, maybe weekly, and just check my patterns and see if there’s anything I can fix [T1D self-care behaviors].

Barriers Impacting Disease and Symptom Management

Four subthemes for barriers described what participants believed negatively impacted their ability to engage in T1D self-care behaviors for disease and symptom management.

Diabetes Burnout

This subtheme aligns with the concept of motivation since participants’ motivation was diminished when they experienced exhaustion from living with T1D, which impacted their mental health. One participant living with T1D for years reported, “definitely get burnt out to the point where my blood sugar is bad, but I don’t have the mental capacity to think about why” [21-year-old White Female]. A participant living with T1D for 2 years described the exhaustion of managing T1D, “everything affects your blood sugar…some days you wake up and your blood sugar is completely different, which I constantly think about and it distracts me” [21-year-old White Female]. The illustrative quotes in this subtheme revealed that both participants who have lived with T1D for years and those newly diagnosed with T1D experienced diabetes burnout.

College Lifestyle

This subtheme aligns with the concept habits since participants endured challenges transitioning from high school to college, such as adjusting to an unstructured (eg, freedom and flexibility) and busy (eg, heavier course load) schedule as a college student vs a high school student. One participant expressed challenges with becoming more responsible for her own healthcare during college, “…readjusting my schedule after living the same way for 12 years was a big change to completely rework how much insulin I got through the day…you’re on your own and making different decisions” [20-year-old White Female]. Another participant described management in high school as “easier to manage because my workload was different” compared to college, “I tackle a whole lot of other things…sometimes it [diabetes] gets put behind” [18-year-old White Male]. Although some participants realized that they had more autonomy in college than in high school, most needed additional support with creating a structured schedule that included when to engage in T1D self-care behaviors.

Difficulty Receiving Medical Supplies

This subtheme aligned with the concept access to care. Some out-of-state participants experienced issues obtaining their medical supplies while at college. One participant shared, “I get all my supplies sent home. I’ve run out of CGMs here [at university] and I’ve had to switch over to a Lantus shot which is long-acting insulin and that sometimes can impact school and social life” [21-year-old White Male]. Some participants also had problems renewing their insulin prescription when switching from a pediatric to adult endocrinologist, “I would have probably made efforts to either get that prescription filled again before leaving my pediatrician, or like getting a new one [provider] or had the pediatrician to prescribe extra insulin until I was assigned a new provider” [21-year-old Black Female]. An out-of-state participant shared difficulties waiting on medical suppliers to send their supplies, “…it’s about a 6-month process to ugh get the device that helps me…. I have to borrow an insulin pump from someone who has an extra one until my new one comes in” [19-year-old White Male]. This subtheme reveals that college students experience barriers to receiving their medical supplies impacting their access to necessary supplies to effectively engage in T1D self-management.

Insurance Limitations

This subtheme also aligned with the concept access to care. Participants were concerned about the limits placed on how many medical supplies (eg, CGM sensors) could be ordered, “the company[ies] only send you what you need for 3 months, like no extras, which is really annoying when your product goes wrong” [21-year-old White Female]. Insurance limitations related to medication cost was also a barrier, “Insurance controls a lot of what I can get. There’s been a lot of issues with getting my insulin at an affordable price. I can’t get my insulin until it’s at a certain price. I’m not going to pay $600 to have a vial for like a month” [20-year-old White Female]. Another participant described how their insurance restricted them from seeing a provider where their university was located, “My insurance doesn’t cover anyone down here. I can only see them [provider back home] during summer break and winter break…harder to touch base when I’m having an active issue…for a while, felt like I was completely on my own” [21-year-old White Female]. Illustrative quotes reveal insurance limitations impact not only the ability to access supplies but also healthcare providers.

Facilitators Impacting Disease and Symptom Management

Five subthemes for facilitators explained what participants believed positively impacted their ability to engage in T1D self-care behaviors for disease and symptom management.

Years of Experience

This subtheme illustrates the concept experience and skill, because participants noted that living with T1D for years was helpful since they had experience managing T1D prior to college, “I don’t think I would be very confident in taking care of myself if I was diagnosed 5 years ago instead of twelve” [19-year-old White Female]. Another participant agreed, “I know that it can definitely be pretty jarring for somebody who is sort of new. I think I’d consider myself sort of a veteran at this point” [20-year-old White Male]. Most participants believed that managing T1D for years prior to entering college allowed them to feel more confident managing T1D independently.

Tangible Support with Supplies

This subtheme describes the concept support from others, because participants received tangible support, which was defined as sharing medical supplies in the diabetes community when supplies were delayed or malfunctioned. Most participants received tangible support from other college students in the diabetes community via a shared GroupMe account (ie, a messaging service that enables group and private conversations). College students with T1D moderated the group discussions and attended the same university or nearby universities. Participants revealed, “They are always texting in there about, ‘does anyone have an extra Dexcom?’, and people are always willing to share” [19-year-old White Female] and “…had to use Group Me to find someone on campus who was willing to give me one of their sensors” [21-year-old White Male]. This subtheme shows how college students have created informal support networks to assist peers who are having difficulty managing T1D due to issues procuring medical supplies.

Emotional Support for Disease and Symptom Management

This subtheme aligns with the concept support from others. Participants described receiving emotional support from members in the diabetes community and external social support from individuals who did not have T1D such as family members and friends. One participant discussed receiving support from friends who attended diabetes camp, “I’ve kept in contact with some of the kids from diabetes camp for a long time. Your just like, dang, my blood sugar has been high all day ehhh I feel horrible, and they are like, yeah, been there, it sucks” [21-year-old White Male]. Other participants received emotional support from family, “My mom is super attentive to my care…she’ll give me a phone call every now and then to encourage me” [20-year-old White Female]. Some college students also sought support from friends without T1D, “I’m going low, I want someone here in case like something needs to happen. She [friend without T1D] sat with me, and it was so sweet” [20-year-old White Female]. The illustrative quotes show that college students living with T1D receive emotional support from both people currently living with T1D and those who are not.

Informational Support for Disease Management

This subtheme also aligned with the concept support from others. Participants noted that other family members frequently monitored their blood sugar using the Dexcom Follow mobile application (ie, simultaneously allows multiple users to track blood sugar), “My mom and dad are followers who can track my blood sugar through their phone. So, when I receive alerts, they do, too” [20-year-old Latinx Female]. Participants described how family members notified them when their blood sugar went out of range, “I don’t wake up to lows very well and that can be concerning when I live 12 hours away from home. My parents reach out [call] as soon as they notice that I am too low” [22-year-old White Male]. In addition to family members, participants described how romantic partners have notified them when their blood sugar was out of range, “My boyfriend is actually connected to my CGM. So, if I’m above 200 or below 50 for more than 30 minutes, he would actually say, ‘hey, do something about that!’” [22-year-old Black Female]. One participant requested informational support from other college students with T1D if they struggled with management, “…if I get into a situation where my blood sugar is doing weird stuff, I can text people who are also like a college student, and probably experiencing a lot of the same things, and be like, hey, is this normal?” [20-year-old White Female]. Illustrative quotes describe how participants receive informational support from others to help with T1D management, including notifications about blood sugar fluctuations and advice to assist with management.

Technology Assistance for Disease and Symptom Management

This subtheme aligned with the concept access to care. Most participants used medical devices (eg, Dexcom CGM) to detect changes in their blood sugar, “The Dexcom for sure gives me alerts when…I’m going up or going down, uhh especially at like a more rapid rate” [21-year-old White Male]. Participants also found mobile applications such as Dexcom Clarity helpful for interpreting the causes of their blood sugar changing, “they have um like reports, maybe like 2 weeks, a week, 3 months type of thing…it shows you like, what are your trends at certain times of the day” [22-year-old Black Female]. Technology, through medical devices and mobile applications, was useful for detecting blood sugar changes and interpreting blood sugar patterns to determine potential causes of inadequate glycemic control.

Conclusion

The purpose of this study was to explore barriers and facilitators for disease and symptom management among college students living with T1D. Participants reported barriers such as diabetes burnout, difficulty adjusting self-care behaviors as a college student, challenges receiving medical supplies, and insurance limitations. Diabetes burnout has been reported as a concern in previous research¹ and continues to be an issue based on findings in this present study, where both participants living with T1D for years and those newly diagnosed with T1D were too exhausted to process how they could regulate their blood sugar. Future research should assess burnout in this subpopulation using measures such as the Diabetes Burnout Scale,²⁵ to develop health promotion strategies to improve mental health and burnout among college students with T1D. Findings from this study and previous studies^7,26 also show that this subpopulation continually experiences challenges adjusting self-care behaviors during college. College health promotion programs and interventions should be developed to provide support during this transitional period by using diabetes care and health education specialists to provide guidance on structuring a self-management routine and strategies to overcome barriers.

Regarding access to care, a previous study²⁷ reported that 26% of participants who were young adults with T1D had to wait 6 months to be assigned a new provider, and another study²⁸ reported that 39.4% of participants who were college students with T1D waited for their new glucometer to arrive. Although our study found similar barriers to accessing healthcare providers, the present study provides additional qualitative details about participants’ experiences with delays in receiving medical supplies from their permanent address, provider, and medical supplier. Related to insurance limitations, a recent study¹³ found that emerging adults with T1D had concerns about affording medical supplies and seeing their provider based on their insurance coverage, which was also a concern for our participants. Therefore, college student health centers should consider providing medical care for T1D management or offering a list of local endocrinologists near the university’s campus to improve local provider availability for students with T1D.

Participants also described facilitators for T1D management, including experience, tangible support with supplies, emotional support for disease and symptom management, informational support for disease management, and technology assistance for disease and symptom management. Years of experience living with T1D remained a facilitator as reported in previous research.²⁹ Caretakers should encourage their children to gain more independence in their T1D management prior to college to ensure self-efficacy remains during college.²⁶ Previous research⁷ has shown that college students with T1D rely on friends who do not have T1D to hold their supplies on their behalf while socializing and rely on their caretakers to order medical supplies.³⁰ However, findings from this study contribute additional information to the literature about college students with T1D receiving tangible support from other college students with T1D by borrowing medical supplies. Future studies should explore additional ways college students with T1D seek tangible support when their medical supplies are delayed.

Previous research³¹ has explored emotional support among college students with T1D and found that college students with T1D who were women requested emotional support during hypoglycemic episodes, but participants who were men did not. However, women and men in our study requested emotional support during hypoglycemic episodes from family and friends; therefore, it is important that this subpopulation continaully receives well-being check-ins. Findings from this present study suggest that healthcare professionals should assess fear of hypoglycemia among college students with T1D since our participants and previous research³¹ showed that college students with T1D requested emotional support during hypoglycemia episodes. Additionally, various populations with T1D have reported receiving informational support using Dexcom Follow from family in previous studies.^32,33 However, our findings show that friends and romantic partners also provide blood sugar alerts. College students with T1D should be informed that mobile applications are available that simulatenously enable multiple users to monitor blood sugar, and future health promotion programs could utilize this social support strategy to address T1D management in this subpopulation. Lastly, research^34,35 has shown that technology can improve glycemic control. However, findings in the present study further describe beneficial technological impacts on disease and symptom management through detecting and interpreting blood sugar changes using medical devices and mobile applications. Endocrinologists and health promotion practitioners working with college students living with T1D should encourage this subpopulation to use their medical devices and mobile applications to maintain glycemic control.

Findings from this present study also contribute additional details about the relationship between the concepts embedded in the theory and how they specifically impact college students’ disease and symptom management. Results from this study revealed that the concept, motivation negatively impacted disease and symptom management because participants experienced diabetes burnout from having diminished motivation. The concept, habits also negatively impacted disease and symptom management because some participants did not structure a routine schedule for management as they did in high school. Access to care was also another concept that negatively impacted disease and symptom management due to delays in receiving medical supplies and insurance limitations with scheduling appointments with a local provider. However, access to care also positively impacted disease and symptom management because college students’ insurance covered their diabetes technology (eg, CGM), which provided blood sugar alerts. Experience and skill was also another concept that positively impacted disease and symptom management because some participants lived with T1D for years, which increased their self-efficacy managing T1D during college. Support from others was a concept that was prominent for positively impacting disease and symptom management because college students received medical supplies from peers, accquired emotional support during hypoglycemia epsiodes, and obtained health information from family and friends related to blood sugar alerts and T1D management support from peers with T1D.

Limitations associated with participants’ geographical region and researchers’ bias related to interpreting findings may have impacted findings in this study. All participants in the present study attended large, public 4-year universities located in the Southeastern US, which limited the ability to understand disease and symptom management experiences among college students who attended private or public universities beyond the Southeastern US region. Therefore, data from this study are only limited to the disease and symptom management experiences among 31 college students with T1D among 5 large 4-year universities located in the Southeastern US. Researchers’ bias may have occurred since data were interpreted by three researchers from our team. Therefore, key findings would have varied if data were interpreted by other researchers.

Findings from this study contribute to the literature details on how managing T1D as a full-time college student is multifaceted and warrants additional research to better address barriers. Our exploration of barriers and facilitators provides additional details about what impedes or improves disease and symptom management for this subpopulation. Findings from this study can also assist other health promotion researchers with developing tailored interventions to address barriers and increase facilitators for T1D management among college students and guide health promotion practitioners, healthcare providers, universities, and significant others on how to support college students living with T1D. Additionally, findings from this study can assist with refining the concepts and theoretical constructs in the Middle-Range Theory of Self-Care of Chronic Illness Integrations of Symptoms¹⁴ to better understand T1D disease and symptom management.

So What?

What is Already Known on This Topic?

College students with T1D experience difficulties performing essential self-care behaviors necessary to sustain glycemic control.

What Does This Article Add?

This study highlights barriers and facilitators experienced by college students with T1D regarding disease and symptom management.

What Are the Implications for Health Promotion Practice or Research?

Diabetes burnout and limited guidance on management during college remain an issue; therefore, mental health support from psychologists and additional resources for navigating college are needed from university disability services and diabetes care and education specialists. Student Health Centers should consider providing medical care to improve access to local providers to reduce insurance barriers. Diabetes technology continues to assist with glycemic control; therefore, endocrinologists should encourage CGM and mobile application usage. Additionally, tangible, and informational support from family, friends, and significant others was also essential for T1D management; therefore, well-being check-ins should continue.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The authors received funding from the University of Alabama to compensate participants for being interviewed.

Ethical Statement

ORCID iDs

Ny’Nika T. McFadden

Amanda H. Wilkerson

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