The Science of Diabetes Self-Management and Care2024, Vol. 50(5) 352–359© The Author(s) 2024Article reuse guidelines:sagepub.com/journals-permissionsDOI: 10.1177/26350106241276434journals.sagepub.com/home/tde
AbstractPurpose: The purpose of this study was to describe the influence of COVID-19 on parents and their young adults with type 1 diabetes as they navigated the college environment during the COVID-19 pandemic.
Participants: A sample of 9 college students with type 1 diabetes and their parents were recruited to participate in interviews via purposive sampling methodology.
Methods: A descriptive, qualitative study was conducted using semi-structured questions via recorded video conferencing interviews.
Results: Three themes related to navigating type 1 diabetes at college during the pandemic emerged: (1) isolation and mental health: COVID-19-related isolation and loneliness; (2) risk and exposure to COVID-19: balancing risk of COVID-19 with type 1 diabetes; and (3) management of type 1 diabetes on campus during the pandemic: academics, university policies, and their impact on type 1 diabetes.
Conclusions: Students with type 1 diabetes and their parents had to navigate a complex set of concerns that extended beyond the usual challenges of diabetes management during the COVID-19 pandemic. Providers must provide additional support and incorporate education about type 1 diabetes management strategies to families affected by large-scale health crises.
There are an ever-increasing number of students with chronic conditions enrolled in colleges and universities nationwide. According to the American College Health Association 2019 National College Health Assessment, 2.4% of students enrolled in college in the United States have type 1 diabetes (T1DM).1 Affecting approximately 193 000 youth under the age of 20 in the United States, T1DM is expected to impact nearly 600 000 youth by the year 2050.2,3 Management of T1DM requires a complex series of blood glucose checks and multiple daily insulin injections, monitoring of diet and physical activity patterns, and responding to episodes of hypoglycemia or hyperglycemia.3 Poorly managed T1DM can lead to acute complications, such as diabetic ketoacidosis and death, and long-term complications, including amputations, cardiovascular disease, nephropathy, neuropathy, and retinopathy.2
In addition to increased risk for variations in glycemic stability, loss to follow-up care, acute complications, psychosocial issues, and sexual and reproductive health issues, young adults with T1DM are at increased risk of mental health conditions at a rate 2 to 3 times higher than their peers.4-7 Approximately 13% to 21% of youth with T1DM screen positive for anxiety symptoms at some point during childhood or adolescence.6,7 Additionally, young adults with T1DM experience depressive symptoms at a rate approximately twice that of youth in the general population.6,7 Anxiety and depression are associated with poorer quality of life and glycemic stability in youth with T1DM, leading to increased concern for this population.6,7 The transition to college can exacerbate these complications due to changes in routine, disconnection from parents, and the establishment of new social networks.8-10
Parents of children going to college must navigate conflicting emotions about the departure of their child from home. While parents appreciate the importance of this rite of passage, they must balance emotional attachment and their child’s burgeoning independence.11
In the winter of 2020, the coronavirus disease (COVID-19) presented a new challenge to both students with T1DM and colleges/universities nationwide. Due to concerns about the virus, most colleges and universities across the United States ceased face-to-face instruction. This led to a shift to online instruction, and residential students were sent home.12 The COVID-19 outbreak led to increased anxiety, concerns about academic progression, and the disruption of students’ activities and social relationships.13-17 During the COVID-19 pandemic, parents of college students with T1DM had to navigate a complex set of concerns that extended beyond the usual challenges of diabetes management. In addition to sequelae related to isolation, young adults with T1DM are 3 to 4 times more likely to suffer severe complications of COVID-19, including hospitalization, than young adults without T1DM.18
To support students with T1DM, colleges and universities are mandated to provide adequate accommodations for students on campus. These accommodations may include eating in the classroom, extra time on tests, and individual living arrangements.19 While this led to the reduced need for accommodations such as permission to have snack in the classroom or have a cellular phone available to monitor blood glucose levels, the rapid shift to online learning led to reduced access to accommodations, such as additional time on tests.
There is limited information about the experience of students with T1DM and parents during the transition to college and even less information about how a pandemic may influence decision-making during this time. Students and parents may have specific concerns related to T1DM and COVID-19 in the college setting; therefore, the purpose of this study is to explore the influence of the COVID-19 pandemic on parents and their young adults with T1DM as they navigated the college environment during the COVID-19 pandemic. Understanding the influence of COVID-19 on the transition to college with T1DM will serve to identify student and parent concerns and will allow for the development of resources designed to support families with T1DM during the pandemic and future health care disasters.
A descriptive, qualitative research design was employed to better understand the experiences of parents and college students as they transitioned to college with T1DM during the COVID-19 pandemic. Parents and young adults were interviewed independently using semi-structured questions via recorded video conferencing. A descriptive, qualitative design provided a rich, detailed account of the phenomena under investigation, capturing the depth and complexity of the experience of the transition to college during the unprecedented circumstances of the COVID- 19 pandemic.20 This design allowed for textual descriptions of the experiences and viewpoints of the participants, allowing for a more authentic representation of the data, and produced findings that are both contextually grounded and reflective of the realities of the COVID-19 pandemic.20,21
After institutional review board approval, 9 young adults with T1DM enrolled in college and their parents were recruited from the College Diabetes Network (CDN; now The Diabetes Link) database via purposive sampling methodology. The CDN is a nonprofit organization dedicated to serving the interests of college students with T1DM and their families as they navigate the transition to college. The CDN has over 70 chapters on college campuses run by students across the United States and manages robust social media platforms for both students and caregivers, providing peer support and connections to local resources. An electronic flyer containing a link to study materials was distributed to both the CDN student and parent database and was shared on social media sites. Parent/young adult dyads were included if the young adult was 18 to 21 years of age, enrolled in college, diagnosed with T1DM for at least 1 year prior to entering college, and lived independent of parents during the school session. Parents were required to be the primary caregiver of the student. Exclusion criteria included inability to communicate in English or lack of internet access.
A link to the study information and materials was shared by CDN with this existing database. Students and parents who were interested in participating in the study completed an eligibility survey. Informed consents began immediately after participants completed the eligibility survey and were obtained electronically by the primary investigator via Qualtrics before they completed the demographic questionnaire.22 The demographic and T1DM/COVID-19 information questionnaire began automatically after consent was obtained. The demographic and T1DM/COVID- 19 information questionnaire collected demographic information including the age and sex of the student; age at diagnosis; specific information about their diabetes management, including A1C and current method of blood glucose measurement; and information about COVID-19 exposure and vaccination status. After completed consents and questionnaires were received, participants were contacted via email to schedule the interview at a mutually agreed on time.
Parents and young adults were interviewed separately. Due to social distancing guidelines related to COVID- 19, interviews were conducted via a recorded Zoom video conference line following a detailed data collection protocol, including semi-structured, open-ended questions focused on concerns related to the transition to campus during the pandemic, COVID-19-related changes in daily routine, and its influence on mental health and their T1DM. Participants were reminded that participation was voluntary and that they could discontinue the interview at any time. Follow-up questions were asked as necessary. Video interviews lasted approximately 60 minutes and took place via a secured link shared exclusively with the participant. All audio recordings were saved as an MP4 file and transcribed verbatim. Participants who completed the interview received a $20 Amazon e-gift card via email. Data collection ceased when no new knowledge was elicited from interviews.
The demographic and T1DM/COVID-19 information questionnaires were analyzed using descriptive statistics. Parent and young adult transcripts were coded separately. Transcripts were read through line by line, and an inductive coding system using an iterative process of recoding, rereading, and reanalysis of transcripts was used to identify emergent themes in the data.23 A list of 25 to 30 tentative codes was applied across the interview transcripts to help develop themes. Member checking was employed to ensure that the interpretation of participant experiences was accurate.24 A colleague of the primary investigator who is familiar with the literature was consulted to improve rigor. Ethical approval for this study was obtained from the Towson University Institutional Review Board. The voluntary nature of participation was emphasized in the study information and consent. Personally identifiable data were deleted after the dispersion of gift cards. All data were secured on the Towson University secure server using at-rest encryption and requiring multifactor authorization for access. Only the authors had access to the data. The consolidated criteria for reporting research were followed in the creation of this article.25
Nine young adults with T1DM enrolled in college and their parents participated in interviews. The mean age of participants was 19.4 years of age. One student was male (11%), 1 was nonbinary (11%), and the remaining 7 were female (78%). Three students were entering their freshman year (33%), 4 were sophomores (44%), and 2 were juniors (22%). Four students had a T1DM provider near their college or university, and 5 students went home for T1DM care appointments. Eight students were vaccinated against COVID-19. All students had permission to have food or drink in class regardless of environment. Seven students reported having both extra time for testing and access to a refrigerator in their room. Four students reported having schedule modifications. Three students could leave class early or arrive late. Two students reported having access to their cars on campus. One student was permitted access to their cellular phone for medical purposes.
Parents and young adults in this study concurred on the impact of isolation on mental health. They also expressed similar concerns about the risk of and exposure to COVID-19 and their perceptions of managing T1DM on campus during the pandemic. Three themes related to navigating T1DM at college during the pandemic emerged from both parent and young adult interviews: (1) isolation and mental health: COVID-19-related isolation and loneliness; (2) risk and exposure to COVID-19: balancing risk of COVID-19 with T1DM; and (3) management of T1DM on campus during the pandemic: academics, university policies, and their impact on T1DM.
Parents expressed concerns about the potential for increased isolation due to the COVID-19 pandemic. Persistent lockdowns, the need for social distancing, and the shift to online classes were particularly concerning because they held the potential to negatively impact the mental health of their children, who were already required to navigate the challenges of managing T1DM during the transition to the college environment. One mother, whose daughter was moving out of state, shared, “I was most concerned about isolation. I believe in having friends and a social network and I was just worried she wasn’t going to have that without any in-person classes.” The move to the online environment, although in some cases temporary, led to less face-to-face interaction and reduced access to support services available on campus. Some parents reported that their children transitioned back to the college environment only to find that they were alone. Another mother said:
She was terribly lonely and just terribly isolated. She lived in a 4 bedroom by herself. She thought she was sick of being at home, but then when she went back to school, she realized, she missed the physical presence of her family.
Students with T1DM attending college during the COVID-19 pandemic were faced with unique circumstances related to their diagnosis. One student, who was returning to campus, shared, “The diabetes. It’s a whole another set of worries about being away from my family, and people who actually know the disease and understand what it takes for me and what it takes on a daily basis.” Although COVID-19-related restrictions led to less social interaction and potential stressors with T1DM management, some students found it easier to maintain blood glucose targets. One student said:
My diabetes was better managed last year because I was not doing anything. I really did not have much of a social life. I was just doing school most of the time. And I was walking a lot to class. So just all the exercise kind of kept my blood sugars in a better range. And, I had more time to plan out my meals, so I was eating better. But mentally I was not in as good of a place because it was kind of lonely.
For students who were coming to campus for the first time or returning after a long period of isolation, the lack of social engagement led to concerns about loneliness and lack of social skills. One student stated, “I feel I’m just struggling to find things to do on campus. Which is hard for me, because I’ve been struggling a lot with loneliness.” Another student reported:
I hadn’t been in a classroom setting since March of 2020. I just feel like I’d been so antisocial those first few months of the pandemic because obviously I wasn’t able to go out or hang out with any of my friends. I just didn’t feel like my social skills were up to par with what you need to be in college.
Exposure to COVID-19 in the college setting was a significant concern for parents, particularly with conflicting information about the potential risk of severe illness from COVID-19. Parents expressed concerns about exposure to the virus in areas where social distancing might be challenging to maintain, including dormitories, dining halls, and classrooms. One parent stated:
COVID was the serious concern and then if she were to get sick, how would she deal with that with her diabetes? Also, just wanting her to have a normal college experience too. That was one of the things that we wanted just because everything was just so unusual for everybody at that point.
Parents also expressed concern about the challenges related to maintaining strict COVID-19 safety protocols, such as masks and social distancing, during social activities. Although it was universally understood that social activities, such as clubs, sporting events, and parties, are an integral part of the college experience, parents felt that adherence to established protocols would be challenging for colleges and universities to supervise. A parent of 2 children with T1DM shared:
Even though she thought she was being safe and doing what we were asking, we basically told her if she tried to go to any events that we would not allow her back into our home. I told her if she did some of this, she needed to find somewhere else to stay, that we weren’t going to let her back in, um, that I was not gonna let her expose me or her sister due to ignorance and really selfishness.
Some students shared parental concerns about the effects of COVID-19. One student said, “It would definitely affect me more severely. . . . If I were to get COVID, I was nervous about that due to the severity of it and sort of like, ‘What am I supposed to do?’” Other students highlighted the importance of evaluating personal risk, with one stating, “This semester I’ve been able to go to club events. We’re still taking the precautions needed. I got tickets to a Jonas Brothers concert, but I ended up not going because I did not feel comfortable with the COVID risk.” In general, students with T1DM understood that they needed to be particularly careful; however, as the prevalence of COVID-19 waxed and waned on college campuses, they began to reconsider their approach to safety. One student shared:
I’ve definitely become a lot more laid back just like it is what it is, whatever happens, happens. And I think that definitely is responsible for my more lax attitude towards it. I’m still being safe and everything, just not as concerned about it. I’m less stressed too, I guess, because I don’t really want that stress in my life. And the odds of me surviving it are really good. So, I don’t want to stress out about something that is a, I don’t know, 1%, I don’t know the exact number, but 1% chance of happening.
Parents reported concerns about their young adult’s access to T1DM care while on campus. Because T1DM requires constant vigilance, including regular monitoring of blood glucose levels, administration of insulin, and dietary management, any disruption to services could have serious implications. One parent shared, “The number one concern was COVID and then diabetes to follow, and a concern of if she were to have COVID on campus, what would we do then?” Exposure to COVID-19 in the college setting was a significant concern for parents of college students with T1DM, particularly with conflicting information about the potential risk of severe illness from COVID-19. A parent of a returning student with T1DM shared, “We arrived after driving straight through and we walked into a place that said ‘wear a mask,’ but the entire staff wasn’t wearing masks.”
Students expressed concerns about how a positive COVID-19 diagnosis would impact their T1DM management on campus. One student said, “COVID and diabetes in college adds another layer of nerves of, well, it’s not just, ‘What if I get COVID in college?’, it’s, ‘What if I get COVID as a diabetic in college? What do I do?’” Although students understood that COVID-19-related restrictions were an important part of safety on campus, some students reported that COVID-19-related policies negatively impacted their ability to manage their T1DM. One student reported:
One of my classes has 11 people in it and there’s like a very strict, no food, no water. If you need something, just go out in the hall real fast. And then in my like physics class, there’s like 150 people and it’s like, okay, we want you to put hand sanitizer on, take off your mask, drink your water, put your mask back on, put hand sanitizer on.
Other students felt that COVID-19 made faculty and staff more aware of the challenges related to T1DM at college. One student said:
I feel like COVID has almost made professors more understanding of having accommodations and everything related to diabetes. I think teachers are more understanding of that given the past year. So, I think if people think accommodations are a hassle, they really aren’t, and professors are going to kind of understand more than they used to.
Families of young adults with T1DM enrolled in college during the COVID-19 pandemic were faced with unusual circumstances presenting various challenges. Parents and young adults with T1DM entering college for the first time and those returning to campus during the pandemic reported that COVID-19 complicated their transition. Research conducted early in the COVID-19 pandemic suggests that individuals with T1DM were in the high-risk category for adverse outcomes related to COVID-19.26,27 In this study, parent and student concerns about the impact of COVID-19 varied from worry about illness to concerns about missing class. During the COVID-19 pandemic, students displaying symptoms of COVID-19 were either sent home or quarantined on campus with limited access to resources, including food and health care. Parents expressed concern about the convergence of COVID-19 and T1DM and what that might mean for their child quarantined on campus or their family should they deem it necessary for their child to quarantine at home. Like parents in this study, some students were concerned about contracting COVID-19 and actively mitigated personal risk; however, concerns about peer behavior remained high. This is similar to research conducted by Risisky et al,28 who found that although students had a desire to return to campus, the behaviors of their peers led to concerns about their own personal safety. Despite increased risk for people with T1DM, several students in this study were not overly concerned about their safety at college, particularly as the COVID-19 pandemic wore on. This is supported by research conducted by Cohen et al,29 who found that boredom and stress led students to be less compliant with health-protective behaviors, such as handwashing, social distancing, and isolating while symptomatic, in summer 2020 than they did in spring 2020. In this study, only 8 students were vaccinated at the time of data collection; however, all students reported wearing masks and taking other steps to protect themselves. Several students reported that their health care practitioner did not push the vaccine or indicate that they were at increased risk due to their T1DM. This information conflicts with a recent study by Gregory and Moore30 that indicates that people with T1DM have 3 times the risk for hospitalization related to COVID-19. This suggests that in addition to concerns about absences related to COVID-19, college students with T1DM are at a higher risk for negative sequelae from COVID-19 infection.
In addition to normal stressors experienced by families during the transition to college, including academics, interaction with peers, and emotional stressors outside the classroom, both students with T1DM and their parents expressed concerns related to the transition to online learning and the pandemic.31 These concerns are supported by Okun et al.32 who found that anxiety and depression among college students increased from before to during the COVID-19 shutdown. Although these mental health concerns are prevalent in the adolescent population, in youth with T1DM, they occur at a rate 2 to 3 times higher than that of their peers without T1DM.6,7,33 Parents and students in this study reported increased distress related to COVID-19 isolation. Herzer and Hood34 found that youth with T1DM are at an increased risk of mental health conditions, including anxiety, eating and behavioral disorders, and depressive symptoms. Research conducted by Elmer et al35 indicates that isolated college students were more likely to report an increase in depressive symptoms during COVID-19. This is concerning because mental health conditions have been shown to increase the risk of both short- and long-term disease-related complications, including episodes of severe hypoglycemia or hyperglycemia, weight gain, and microvascular disorders, in youth with T1DM.6,7,33
Residential students were not permitted to live on campus due to concerns about the transmissibility of COVID- 19. Dining halls and instructional buildings were closed to student and faculty use, and coursework and club meetings were moved online, with little to no opportunity for face-to-face interaction. Internships, sports, and other traditional activities associated with the college experience were no longer available, restricting the ability of students to make connections with their peers. Students reported that lack of opportunity for socialization left them concerned about their social skills, leading to further isolation and distress. Parents, despite being worried about COVID-19, acknowledged the importance of social activities and attendance at campus events. Gopalan and Brady36 report that a sense of belonging is a significant contributor to college students’ social and academic outcomes. Lack of available traditional campus activities combined with concerns about potential safety risks led students with T1DM to feel even more disconnected from not only their peers but also the campus community, leading to increased distress and deleterious effects on students’ mental health.
While parents were primarily concerned about how colleges and universities would keep their child safe from COVID-19, students reported variations in how COVID-19-related restrictions were applied across campus. Restrictions varied from setting to setting; however, when they were relaxed in certain settings but not in others, this led to a sense of distrust among students and parents. Research conducted by Lu et al37 found that colleges within the first 2 weeks of the semester were at higher risk of becoming “superspreaders” for communities. This indicates that parental concerns about adherence to protocols were well founded. Students indicated that special attention paid to restrictions led to increased awareness about T1DM-related accommodations in the classroom. Policies allowing more flexibility in classroom attendance and online learning allowed for enhanced ability to manage their T1DM. Although less time spent walking to class or engaged in activities outside the dorm left students with more time to manage their T1DM, some students indicated that COVID-19 led to changes and/or uncertainty regarding rules around eating or drinking in class, leading to conflicts with ADA approved accommodations. This is supported by evidence from Gin et al,19 who found that more than half of students with disabilities reported receiving their ADA accommodations and that although some accommodations were being offered, they were not universally implemented. This suggests a gap between recommendations from campus disability services offices and instructors. Lederer et al38 suggest using data to inform decisions about COVID-19 and that clear communication about those decisions is imperative. Additional training for both disability services offices and instructors to ensure that recommendations are pedagogically sound and implemented with fidelity is needed.19 Compliance should be monitored not only to ensure that are institutions meeting their legal obligations for students with disabilities but also to ensure that students have access to appropriate accommodations in and out of the classroom.19
This study was not without limitations. Small sample size and limited access to participants due to COVID-19-related challenges limits transferability. All participants in this study were non-Hispanic, White; therefore, this may not speak to the experiences of families of different races/ethnicities. Although it is likely that students with chronic conditions other than T1DM also faced challenges during the COVID-19 pandemic, this study only focuses on the experiences of families of young adults with T1DM. Although it is certain that access to health care and/or health insurance, health literacy, and financial security influence young adults at college with T1DM, analysis of these socioeconomic factors was beyond the scope of this study.
Families of young adults with T1DM enrolled in college during the COVID-19 pandemic faced unique challenges related to their diagnosis. Parents were primarily concerned with their young adult’s mental health and physical safety, while students worked to evaluate their comfort with personal risk, making decisions about social events and activities based on their comfort levels. Parents and students alike reported that COVID-19 restrictions ultimately led to isolation, loneliness, and limited social interaction on campus. Although some students found it easier to manage their blood glucose levels due to reduced social activities, many experienced mental health struggles and loneliness. This study highlighted the increased mental health concerns among students with T1DM during the pandemic. Returning to normal campus operations after a large-scale health crisis is a priority; however, the safety of students takes precedence. The creation of policies and programs incentivizing students to comply with safety protocols and providing increased access to mental health services during times of crisis is imperative.
Inconsistent safety messaging and decreased access to accommodations exacerbated challenges for students with T1DM. The need for clear communication to students and their families and consistent implementation of T1DM-related accommodations are paramount. Colleges and universities must consider their at-risk populations when planning mitigation strategies to ensure that the needs of all students, both with and without disabilities, are met during widescale health crises.
The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
This research was funded by a Faculty Research and Development Committee grant from the Office of Sponsored Programs and Research at Towson University.
Michelle M. Ness https://orcid.org/0000-0001-5435-6932
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From Department of Nursing, Towson University, Towson, Maryland (Dr Ness).
Corresponding Author:Michelle M. Ness, Department of Nursing, Towson University, 8000 York Rd, HP 5110P, Towson, MD 21252, USA.Email: mness@towson.edu