4.1 Changes in Lifestyle
The transition to university brings multiple changes in lifestyle impacting T1D self-care, which have been categorised into drinking habits, eating habits, sleeping patterns, physical activity habits, and routines.
4.1.1 Changes in Drinking Habits.
Alcohol has an extended impact on blood glucose and often comes in sugar-filled drinks, so its consumption brings with it difficult to predict insulin requirements [
37]. Participants commonly brought up alcohol when discussing the changes experienced in the move to a UK university. In most cases, this was associated with an increase in frequency and intensity:
“I obviously was drinking before I’d come to uni, but not to the same level” (P14). This increase in alcohol consumption had a detrimental impact on T1D management:
“I definitely drank a lot more while I was at university and so sometimes I think it was a bit difficult to manage” (P20). Despite this negative impact, wanting to fit in led to alcohol consumption nonetheless:
“you know it’s really bad for your blood sugar and then at uni I was kind of like well everyone else is, you know I’m going to drink more” (P21).
Due to being faced with new experiences around alcohol, young adults are forced to learn how to react: “Going out, I hadn’t done that at home, so that was something to learn” (P06). P10 spoke of their process of learning through experience, “just lots and lots of testing really. And then when you can see the trends just making small changes”, but warned of being overzealous in this approach, “if you change anything too quick, especially if you’re drunk, it’s, it’s not a good recipe”. P21 referred to the learning process as a “trial by fire sort of thing”, throwing themselves into the situation to have to adapt in the moment. Part of the learning process is “trying to work out how [alcohol] really function, especially with different types of drinks” (P13) and understanding these nuances to manage their T1D better in future. This also involved having more honest conversations with clinicians now that they were adults: “my doctor, my guy just said to me like you’re better going for like stronger spirits ’cause there’s less carbs and that makes it a bit less complicated” (P14). The initial alcohol induced self-care challenges changed over time, especially as the student progressed at university and the initial major transition to first year ends, “I don’t go drinking the same now, like I’m a fourth year” (P06).
The learning culminates in numerous new strategies for managing T1D around alcohol. Some strategies concentrated on blood glucose preparation before a drinking session, which often involved food and insulin: “I tend to definitely eat before I go” (P08) and “when I have like dinner, I’d probably just take like half of what I need” (P11). Another commonly mentioned management strategy was the progression of drinks chosen on the night, which P16 detailed: “I [...] drink drinks that don’t really have any sugar in them, [...] earlier on, and then if we’re out later I’ll like drink like sugary drinks to [...] get a bit higher before I go to bed”. However, all established strategies have their limitations, “once you’re like five drinks deep, that [...] doesn’t always get maintained to be honest” (P11), with alcohol itself a contributing factor to this. For P14 the prolonged impact of alcohol caused longer-term difficulties: “I’m never gonna have a good bloods day [...] the next day”.
At university, alcohol consumption often increases in frequency and intensity, sometimes brought about by social pressures. Through trial and error, young adults develop strategies around insulin management and drink choice, although the cognitive impact of alcohol can make this learning process more difficult.
4.1.2 Changes in Eating Habits.
The timings and composition of meals will change the insulin required to manage it [
37]. In the move to university, the young adults often had to take on the responsibility of organising meals from their parents:
“I need to figure out when I’m going to eat for myself because no one else is around” (P03). As a result, the timings and content of these meals changed, which in turn impacted self-management:
“certainly with meal time to change up [...] and the nutritional content of meals wasn’t quite the same. So no, it definitely made it more difficult.” (P10). P17 described this change as going from
“eating properly to not eating as properly. And, and it was definitely more like snacks rather than full on meals” (P17). In contrast, some university students live in catered halls for the earlier years of their degree where food is provided for them, which brought other challenges to adapt to:
“I couldn’t weigh anything. So, I think there was a lot of carb guesstimating going on, which probably wasn’t the best” (P23).
Young adults have to learn to manage this new diet, which involves “getting used to like new foods that I was being exposed to” (P02) and helps to build experiential knowledge to be applied in the future. P07 found the responsibility of planning meals brought with it the freedom to adjust the schedule to fit with T1D management: “Sometimes with my meal times will be delayed like quite hours because I’m waiting for my bloods to come down”. The same freedom also results in “going out with like friends and stuff or getting food like on after nights out” (P11), creating further scenarios to adapt to. For some, such as P02, it was beneficial to their T1D management to be more in control of the preparation, “It’s sort of great ’cause I know when I’m about to cook and during that process I can sort of scale out when I need to give the insulin”. Taking a bigger role in preparation of meals led to better understanding of how to manage them.
From this learning, the young adults develop T1D management strategies, where the increased independence was found to allow for greater flexibility in timings and content of meals: “if I’m running high, I’ll probably tend to do something a bit more on the low carb side of things [...] if I’m running low, I’ll probably have those extra carbs in my food” (P03). It also means the timings of meals can be adjusted, although for P02, this created a dilemma with the wider health implications of T1D management decisions: “is it worse to be starving yourself or is it worse to have slightly bad control for an hour or two?” It is sometimes difficult to stick to the ideal management strategy, which can cause frustration when their more established T1D management practices dictate actions that go against in-the-moment personal preference, “one thing that like diabetes, like really annoys me with. So, if I go low and really don’t want to like have to eat” (P11).
At university, the timings and content of meals change and young adults learn to utilise their agency to manage these changes, finding effective strategies in delaying meals and better understanding their preparation.
4.1.3 Changes in Sleeping Habits.
During sleep, basal insulin is primarily at play, so when a person’s sleep schedule changes their basal schedule needs to be adjusted to match it [
37]. At university, there is a different set of pressures dictating when to sleep. As a result, the sleep pattern of young adults moving to university often changes,
“all of the sort of nature of when you’re awake and you sort of sleep schedule changes” (P10). The timings of sleep change but it also becomes
“a bit more erratic, um at uni” (P16), with a shift to
“going to bed like a bit later” (P03) and being
“allowed to sleep a lot later” (P18). Often this contrasts with life before university:
“school, it’s a little bit more structured, so it’s like I’m gonna be waking up for 9:00 o’clock everyday [...] Whereas now I’m like I could sleep in like if I don’t have lectures” (P05).
The new sleep schedule disrupts previous T1D management practices, “it just threw all the, the basal and the carb ratios a bit out of wack [...] I just put insulin in and it’d just send me low ’cause, ’cause the body wasn’t quite adjusted to it” (P10), so new strategies needed to be learned. These strategies need to reflect the variability in lecture timetables, which allows for more flexibility but can impact T1D management: “I wake up whenever my first thing is so [...] having my routine be at different times every day I found really impacted my bloods” (P07). Often this learning happens through experience, such as P03 who found out the consequences of poorly managing sleep: “I can go to bed at 4:00 o’clock in the morning if I wanted to and nobody bat an eye, except me in the morning when I’m kicking myself”.
Over time, the young adults gain an understanding of the nuances of managing T1D around their new sleep schedule: “On a normal day, it just plateaus if I don’t do anything. But if I it feels like if I give a tiny amount of insulin it just suddenly drops” (P02). P02 also highlights bringing in consistency where possible to make T1D management easier: “I need a schedule for better control because then you can predict what’s going to happen and you can set up background rates to work a bit better”. Some participants had also linked out-of-range blood glucose levels with poorer sleep: “like sugars definitely affect how much I sleep [...] if it’s normal to low I can’t sleep and if it goes high in the middle of the night then I can’t wake up” (P18). This link increases the importance of finding effective T1D management strategies around sleep, which is made difficult by the instability of university life.
At university, sleep patterns can be sporadic and variable, which often are in contrast to life prior to university. Young adults learn the negative impact this has on T1D management and begin to aim for a more consistent sleep pattern.
4.1.4 Changes in Physical Activity Habits.
The blood glucose impact of physical activity varies depending on the activity type, the person doing it, and the context, making new activities hard to predict [
37]. At university there are more opportunities to try different sports and exercise,
“I was in a city, so, um, gyms are more local” (P06), as well as the freedom to choose what to do and not to do,
“I was a distance runner [...] and that sort of stopped when I moved away and, and became a bit more sedentary” (P10). There is also a change in social activity, with dancing during ‘clubbing’ being common:
“this year I started going clubbing which obviously is physical activity that does not compare to anything else. Especially with the alcohol involved” (P07). Numerous new household chores which were picked up in the transition from their childhood homes were also found to impact blood glucose levels, including cleaning,
“cleaning always makes my bloods go low” (P07), tidying,
“when I’m tidying up [...] that definitely does seem to drop my blood sugar level” (P17), packing,
“if I’m packing to go on holiday or going away for the weekend [...] definitely noticed them them drop” (P24), and cooking,
“I did all the cooking and then by the end of it I was, you know, my blood sugar was really low” (P21). Although participants had some experience with these chores, their usual or routine chores changed significantly when living independently for the first time. The use of transport also plays into physical activity and its impact on T1D management. Mode of transport can change based on new living situations and the location of the university, for instance in a city:
“because buses obviously are expensive and you don’t have much money at all, so I did a lot of walking” (P12).
The changes to physical activity had an impact on T1D management: “I don’t think I’d do as much. And I think that was probably having quite a big effect on my levels before I went to uni which isn’t there anymore”. Although, sometimes these impacts were more positive: “I picked up hobbies and did more exercise and the exercise definitely seemed to help manage the diabetes” (P08). Many of the changes to sport and exercise were a shift to more solitary activities, “I was in the football team too, so I’ve, I’ve not been been doing much of that. I, I’ve, I guess started going to the gym” (P10) and “I played football every week but that was about it and this year I try and run like two or three times a week” (P14). Participants also noticed the impact of travel on T1D management: “moving to a city where you walk pretty much everywhere had a huge impact on my bloods” (P07). P11 found these changes to the mode of transport advantageous at times: “you can’t drive back if you’re low [...] which can sometimes lead to like highs instead, uhm, but because now I just walked the gym or I walked to netball it doesn’t really matter”.
Participants developed strategies to manage around the new activities they had picked up, “especially for dance, taking my insulin pump off was something that helped me to manage um my level” (P17). However, compared to sport and exercise, where participants had precise management strategies, “a 60% basal rate two hours beforehand” (P12), the majority of participants forget to factor household chores into T1D management: “It’s not like a defined sort of sports, I haven’t like accounted for in the same way” (P09). By contrast, P19 had learned to use it as a management tool: “if I’m running a bit high, I’ll just do a bit of cleaning as a way of bringing them down”. The strategies developed for physical activity required consistent update as the young adult’s lifestyle shifted over time: “I don’t go to the gym this year because I don’t really have time” (P21).
At university, new exercises, social activities and household chores are experienced, as well as changes to the mode of travel. These physical activities all have an impact on T1D management and young adults learn, in most cases, to adjust for them. However, some proved quite difficult, such as household chores, that they had less experience of before university.
4.1.5 Changes to Schedule and Routine.
Activities of daily life and their patterns have a strong impact on basal insulin requirements and variations or changes to these patterns have a knock-on effect on that requirement [
37]. Many factors contribute to daily routine and, in the transition to university, most of these change:
“I was sleeping at random times, eating at random times, drinking at random times and my blood sugars just didn’t respond well” (P04). There is often irregularity in schedule,
“our timetable each week is was normally different” (P24), which adds to the difficulty of adapting and is often a stark contrast to life before the move:
“my blood sugar got a lot worse when I came to uni. I found it much easier to deal with at school when there was much more like a regular routine” (P16).
Awareness of the quickly changing nature of university, “I’ve got a gap between two lectures but then all of a sudden I’m called into a meeting” (P05), teaches young adults to be adaptable. They move between different environments, each of which has different impacts on T1D management, “I’ve moved back home for like two weeks and all of a sudden I’m going hyper a lot more” (P05). Also, within the social side of scheduling, participants found there were consequences of overcommitting your time, “if you’re not really very good at being like no, I’m gonna stay in. Then sometimes you just see kind of the negative effects of that” (P11).
Participants drew causal links between routine and T1D management, such as P22: “when I’m busy, I’m in the motions of doing everything, including keeping a track on it. But if it’s like a lazy day, then I’m probably not looking at as much”. At times this was then implemented into strategy, for instance with medication changes: “I always notice when I get home is that I suddenly have to up all of my Lantis for the evenings” (P01). However, the changing nature of university means most end up adjusting their “management to fit the schedule rather than the other way around” (P16), which as P17 found was a continuous process: “At one point, there was like I’d got into a routine that was definitely seemed to be working. Um and then [...] my lecture and seminar times changed so then it’s just been trial and error since”. The result is a more reactive strategy to T1D management where new scenarios will be regularly met but form learning opportunities to inform future management.
At university, lifestyle changes influence daily routine, which often consistently fluctuates with a new set of work or social pressures. Young adults learn adaptability to combat this and try to bring in consistency where possible.
4.1.6 Summary of Changes in Lifestyle.
In the transition to university, a young adult’s lifestyle goes through many changes, which has a knock-on effect on T1D management. The previously less documented of these are the consumption of alcohol (which is prevalent in a UK context), performing more household chores, the change in use of transport, and the role of social pressure in causing many of the schedule changes. The complex impacts of these factors on T1D management are learned over time by the young adults, who must adapt their management strategies to the new setting.
4.2 Changes in Support Network
The move to university changes a young adult’s support network, bringing independence and removing parental supervision. As a result, T1D needs to be explained to new people and new support networks need to be developed.
4.2.1 Increased Independence.
Moving away from a support network forces independence on young adults managing T1D. In terms of the day-to-day management process, 14 of the 24 participants expressed they were already independently managing prior to university, “throughout being teenager I very much could just controlled it myself” (P19), and participants were comfortable with this process: “I’ve always been quite happy just on my own and just me managing it” (P17). However, there were still moments of realisation of the lack of support: “that was probably the moment where it felt most like ‘Oh my goodness, I’m not living at home anymore. I’ve got to look after myself”’ (P06). The independence also brings isolation, “I don’t actually know anybody with type one that I speak to about it, and so you can speak about it to people, but they don’t fully understand” (P19), and the loss of safety net, with P19 describing that at home “if I didn’t surface for a day I’d have someone knocking on my door saying ‘where are you?”’ compared to now where they and their flatmates “could go 36 hours without seeing each other and it not be a weird thing”. If something does go wrong, the chance of it being noticed by anyone other than the person with T1D is diminished.
The participants learned that the prior ability to independently manage was vital, “it was fortunate that I’d had it for so long because that wasn’t an extra thing I was having to deal with” (P02). They also came to realisations on the lack of knowledge in those around them: “my friends knew I was diabetic [...] there wasn’t really anyone that I, you know, rely on for actual, you know diabetes management support” (P21). With this realisation came an increase in awareness and care of their management, “I put a lot more effort into it [...] ’cause I still don’t have that support constantly around me” (P22). Outside typical daily management, there were additional difficulties to cope with: “illness was one, for freshers’ flu and stuff that’s obviously harder to manage when you’re on your own” (P06).
As a result of the independence, participants found a better personal understanding of their management: “I’ve gained just more of an understanding of my diabetes. Um again, because you are solely responsible for it” (P19). From this understanding they were able to adjust their T1D management to comply with independent living, “the good thing about kind of being in charge of myself is that I have complete control over my food” (P06). P22 explained technology’s role: “[I] have that independence through using technology and things with my condition, I think it’s been really helpful”. For some, like P17, it also boosted confidence in their management ability: “it’s definitely helped me a lot. Let’s say I’m definitely more independent and less kind of anxious about being on my own”. This fed into the wider feeling across participants that independent management was necessary for the future, “we have to live with this for the rest of our life, so we can’t really depend on other people to tell us what to do” (P23). However, the awareness was not necessarily linked with improved management, but instead with improved attitudes over time: “I’d say the control overall maybe hasn’t got better, but my attitudes got much better ’cause it’s now definitely my responsibility. I definitely I need to be more proactive” (P02).
At university, young adults find fewer people supervise what they do, so they have to take on more responsibility for their T1D management and gain understanding of their condition for the future.
4.2.2 Parents’ Role in T1D Management at University.
A major part of the difficulty of independence is no longer being in close contact with parents, who often form a major part of the support network, “my mum, used to sort of look over my, um, blood sugar levels and stuff a bit more. And obviously I’m not at home, so she doesn’t” (P21). This is particularly noticeable in elements of management, like carb counting for P14, who was “used to just saying to mum [...] ‘do you know how many carbs are in it’ and she’d [...] go through and look at every ingredient”. The reduction in support brought with it negative consequences, “Mum would usually like say ‘dinner is 15 minutes away’ and I’m like, ‘oh, cool pre bolus.’ But when you’re cooking yourself, [...] I forgot my insulin” (P12). There was also a view across several participants that their parents worried about their T1D management when they moved to university, “my mum, um worries a lot about me” (P05). One major recent development in T1D technologies is the ability to send blood glucose readings over the cloud, “the [Abbott] LibreLink account stuff that if they wanted too, I think my parents have access to that” (P10). This is a new way of connecting parents to their children with T1D and allows them to remotely monitor blood glucose readings. However, these systems bring with them challenges, “she constantly talks to, texts me about it and she knows that it’s really annoying [...] my blood will be like 3.1 and she’ll be like, ‘oh maybe it’s your basal, or maybe it’s your carb ratio’ and I’m like, ‘I don’t wanna think about it right now”’ (P07). Taking over the more administrative elements of T1D management also caused difficulties, “it was a bit more of a shock [...] the eye checks, have checks at the GP surgery, have the appointments with the diabetes nurse” (P23). This work came as a surprise to many participants as it was commonly assisted by parents: “my parents used to pick up my prescription, so it was less stressful before” (P18).
Some participants learned the importance of keeping track of supplies through hard lessons: “the first couple of months I was like ‘Oh my God I’ve got like 2 days of insulin left. I need an emergency prescription”’ (P12). Events like this can be very dangerous, and participants began to understand the effort involved in avoiding it when they were solely responsible, “it just took so much more time out of my life now because I didn’t have someone else doing it for me” (P07). Without parents around to complete these tasks, young adults are forced to learn to do it themselves: “I relied on mum originally for working out the actual carbs content that I’ve had to learn and try and work out myself” (P22). However, in some cases, it is difficult for parents to relinquish their role in T1D management, “I basically said to her I need to manage this [...] this is like for me to control and not her [...] That was the best thing for it. Probably not her eyes, but my eyes” (P06). At times, the lack of parental supervision was viewed as a benefit as “it’s kind of nice not to be nagged about things” (P21), although the use of remote blood glucose tracking allowed parents to help: “I mainly just use it at night time so that my parents can see my readings [...] if it alarms and I don’t wake up, [...] they can like ring me [...] it definitely makes me feel a lot safer” (P17). However, P14 found it allowed their parents to infer other information about what they’re doing, which the participant did not want their parents to be aware of: “It was it was like freshers and I was testing it like 6 in the morning to make sure she’d obviously she’d be messaging me like ‘have you just got up or what?’. And ‘nah still not gone to bed, Mum”’.
For some, sending readings was found to be a way of alleviating worry, “they would definitely lose a lot more sleep, not knowing and worrying and stuff” (P17). However, other participants felt it would only increase parent’s worry, “I don’t think it’ll be a good idea for anyone for me to send it to my mum. I think it would just cause everyone a lot of stress” (P11), so resorted to removing parents from the system to avoid nagging, “If I was gonna send it to anyone, it’d be my mum, but I don’t want the hassle” (P15), and to hide their management, “I don’t like the idea of someone can consistently watching it” (P05). Parents did still maintain their role as a source of information, “things relating to my diabetes, I probably would have called my mum and dad” (P20), and a person to talk to if something is going wrong, “There was one night when I went really high and I did ring mum like it was a stupid time like 2 in the morning, ’cause I was just panicking” (P06).
At university, parents’ role in T1D management changes because they are no longer around, so the young adult needs to take on this work. However, remote monitoring technology allows for some parent involvement, which in different situations provides reassurance but also privacy concerns.
4.2.3 Explaining T1D to People at University.
Without parents around, others can be informed about T1D in case of emergency, “making sure that like the friends that I’ve made it at uni knew that I was diabetic and like I just told them what to do if anything does go wrong” (P24). However, this can be difficult as “you have to establish your friends first before you can know, kind of who you need to educate” (P16) and can cause anxiety “I didn’t really tell anyone I was diabetic either in the first year. I just just didn’t want to. I was scared what they’re going to say”. While difficult, those that did explain T1D to others were met without prejudice, “it’s quite difficult when you tell people, but I did I told all my flatmate um and they’re like, ‘Oh yeah, it’s fine”’ (P17). Some participants also wanted to raise awareness of T1D, “I wanna make people around me understand it because it’s always like frustrated me the lack of understanding that people have had” (P09), which was often triggered by technology, “a lot of the time, like people will see my sensor and ask about it” (P13).
When trying to explain T1D to others, participants found there was little prior knowledge, with P09 finding a “lack of understanding between the difference between like Type 1 and Type 2” and “people always being like ‘what you don’t look fat’, uhm, which is not a helpful”. As result some participants felt the need to combat the misunderstanding: “I find it quite nice to explain to people what, what it is, especially like fight some of those misconceptions” (P24). However, sometimes even after explanations, people struggle to understand T1D management: “blood sugar is low once and this, uh, a girl I was with was like ‘let me go get you insulin’ and I was like ‘no that’s not what I need like you’re gonna make it worse’ [...] I just wouldn’t really trust anyone else to help me with it”. As a result, it reinforces independent T1D management and the careful development of a support network.
Over time misunderstandings can be broken down, with close friends beginning to pick up some of the nuances of T1D management, through exposure to it. This can start with just recognition of the condition, “one of my friends for a few months before was like ‘ohh [P24], you’re diabetic”’ (P24). Over time the understanding builds, “gradually like the longer I spend with people. And the closer I get with them, they generally start to [...] recognise when I’m going low just because of how I’m acting” (P09). This learning can be from experience rather than from explanations, “they don’t necessarily know like whether I’m high or hypo, they just know like something’s wrong. Uhm and then they like they kind of tell me to like stop and check and stuff” (P09). Here the support network begins to reform, with less independence, as new people become part of it.
At university, young adults meet many new people, most of whom don’t understand T1D, which results in the young adults needing to explain the complex condition. This can have mixed results, but eventually, as friendships form, understanding is found and support provided.
4.2.4 Assistance from Others with T1D Management.
Having explained T1D to others at university, some begin to take roles in supporting management, “I’d spoken to a few people in my halls, it was almost like they were learning with me sometimes, so they occasionally helped me out” (P01). This can be helped with prior experience with T1D: “one of my friends, her dad is diabetic, so like when we’d go out together, she’d be like, you know, ‘make sure you do your blood sugar’ like she’d know, which is quite nice” (P21). However, in terms of exposure to new technology it was still family members that provided support: “My mum is [...] always keeping an eye on new technology so she first found the Libre” (P13) and “my brother’s diabetic, and he kept going on about how good it was [...] So I thought I’d give it another go” (P02).
The support from others develops over time as they learn to assist with various areas of T1D management, from physically checking blood glucose levels, “if I get very very drunk and I’m passed out, he’ll come up to [...] see if everything is OK” (P15), to emotional support, “not really anything to do with my diabetes but just in general just providing like that emotional support” (P20). The use of remote blood glucose tracking systems furthers the assistance they can provide, “my other half have access to it so that is brilliant” (P12). Also, the young adults find other sources for help researching T1D technology, for P23 it was through support groups: “I’ve then downloaded the app that, um, the rapid calc [...] was actually recommended to me by other people with type one diabetes through the support group”.
The remote blood glucose tracking systems form effective safety nets to fulfil the role parents previously held: “my housemate who I live with has access to my blood sugars all the time. So, if like I’m in my room and he’s in his room and I’m not doing well, he can like just see how I’m doing” (P03). P07 had furthered this system to include alerts so in the case of an adverse event someone else was aware: “My flatmates have the alerts on for if my bloods are dangerously high or low just so they can come and check on me and see if I need anything.” Also, the sources of T1D support became more consistent, “support group were really helpful because [...] any problems in that we can kind of just speak to each other about it” (P23), and through such sources participants reached an equilibrium in responsibility for T1D management: “it used to be that [parents would] look into it, and I wouldn’t really, but now it’s, it’s more equal” (P17).
At university, the new support network that forms still involves parents but also friends at university and support groups. The assistance provided includes research and management support, with remote monitoring sometimes utilised for this.
4.2.5 Summary of Changes in Support Network.
The transition to university changes the people seen regularly, requiring more independent management, especially as the support network reforms. Expanding on previous findings, the change particularly impacts the more administrative side of T1D management, the process of explaining T1D to others and the role of remote monitoring technology. These elements combine to result in an updated support network with more independence for the young adult.