Health Literacy Among Young People With Type 1 Diabetes: A Qualitative Study of Patient Involvement Free

To offer a nuanced understanding of the psychosocial elements that shape diabetes management and overall well-being among young people, we chose a qualitative research method. This study adheres to the COREQ (consolidated criteria for reporting qualitative research) guideline (10). The data collection technique focused on capturing narratives and subjective insights.

The study enlisted participants from the specialized diabetes clinic at North Denmark Regional Hospital. As illustrated in Figure 1, a total of 32 participants fulfilled the following inclusion criteria: a confirmed diagnosis of type 1 diabetes for at least 2 years, age 18–24 years, and living independently. The exclusion criteria were psychiatric conditions (e.g., attention deficit hyperactivity disorder or substance addiction) and insufficient Danish language skills.

The selected people received an e-mail explaining the purpose of the project, details of the group setup, and an invitation to take part in the study. Among the eligible participants, only two responded positively to this e-mail contact. For the remaining participants, we reached out using text messages, and, if there was no response, we followed up with a phone call. Finally, nine participants fulfilling the inclusion criteria accepted the invitation. To accommodate their availability, the nine participants were divided into two groups based on their preferred time slots for group interviews. The group interviews were designed to open the possibility of interaction between group members and allow them to explore and clarify individual and common perspectives (11).

The group interviews were conducted in May 2021 in a quiet meeting room at the North Denmark Regional Hospital. Author D.M., an experienced doctorate-prepared researcher who is not affiliated with the diabetes outpatient clinic, conducted the interviews and served as moderator.

Initially, participants were informed about the aim of the group interview, and then all participants and the interviewer introduced themselves. All participants were encouraged to share their experiences and thoughts. The interview guide was based on a study by Olesen et al. (11) reporting findings on health literacy in Danish people with type 1 diabetes (12). The focus was on relations (e.g., with parents, friends, and HCPs), knowledge (e.g., lack of knowledge, form of communication, and experiences), and motivation (e.g., will, feelings, and competencies). The questions in the group interviews were open.

If the participants responded directly to the moderator’s questions, they were encouraged to speak and interact with each other (13). The interviews lasted 90–120 minutes, were audio-recorded, and were transcribed for analysis and subsequently reviewed to ensure accuracy before analysis. They were not returned to the participants.

The transcripts were read by the analysis team of three investigators (M.O.N., H.F., and D.M.). The team members used an inductive approach and created a code list to identify potential themes across the transcripts. Subsequently, the team of investigators discussed the themes and reached a consensus regarding the inductive coding. The transcripts were coded in accordance with the final list of themes, and the team identified a list of representative quotes within each theme. The most representative quotes were selected for presentation in the results section.

The themes formed the basis for four subsequent information sessions. All young patients with type 1 diabetes aged 18–25 years who were referred to North Denmark Regional Hospital were invited to participate in the sessions. After the sessions, the participating young people were contacted by a researcher and gave a telephone interview about the perceived benefits of the theme sessions. These short individual interviews were analyzed and are presented in the results section.

This research adhered to the principles outlined in the Declaration of Helsinki. In accordance with Danish legislation, the regional ethical committee of Northern Denmark assessed the study protocol and exempted it from formal approval requirements. Participants gave informed consent to participate in the study before taking part. The Danish Data Protection Agency approved the study (no. 2021-088). All documents, including signed consent forms and interview transcripts, are maintained in compliance with the General Data Protection Regulation.

Nine young patients aged 18–24 years and diagnosed with type 1 diabetes participated in the two group interviews. Eight of the nine participants were female, the mean age was 21 years, the mean diabetes duration was 11 years, six of the nine participants were treated with insulin pen, and three used an insulin pump.

The transition from being a child to an adult can be challenging for people with type 1 diabetes. This was illustrated by statements from two of the participants in the current study. One said, “. . . it was always my parents who took responsibility for it; for me, it has always been difficult to gain control.” Another said, “I’ve always been very open about my diabetes until I reached my teenage years, and I thought, ‘I don’t want to be the odd one, and I ignored my diabetes for years.’”

The data analysis shows that young people with type 1 diabetes experience challenges in relation to 1) access to knowledge that they have either not received or wish they had received earlier in their lives and 2) how they prefer to receive new knowledge. This finding led to the development of two themes: 1) challenges and knowledge gaps and 2) knowledge acquisition.

The young participants mentioned several challenges related to being young and living with diabetes, and problems related to alcohol intake were a consistent issue. One participant said, “I actually think, the hardest thing about diabetes is alcohol.” Another participant described how drinking alcohol affected blood glucose:

The interview indicated that some of the young participants stopped drinking alcohol because of unstable blood glucose and the risk of hypoglycemia. One said, “I’ve stopped drinking. I can’t control my blood glucose when I do.”

The young people also expressed that they did not fully understand the calculation of long-term blood glucose (A1C) and the meaning of unstable blood glucose. As one put it, “I don’t know how to interpret long-term blood glucose and don’t quite understand why it’s important.”

Several participants expressed concern about the long-term consequences of having diabetes. One said, “I am also afraid whether I’ll need to have a toe or a leg amputated at some point. It worries me a lot. Another noted that unstable blood glucose can also affect mood, which can be a challenge, saying, “My mood swings can completely run wild, and then I feel so guilty afterward and think I have to apologize.”

The young people who were in relationships also experienced challenges related to how diabetes can affect cohabitation in everyday life. One noted that her boyfriend “is afraid that my blood glucose will be too high or too low.” In relation to sexuality, most of the young people experienced challenges (e.g., in relation to using an insulin pump). One asked, “Do you take it off, or do you leave it on?” This issue can even be decisive with regard to whether a young person chooses to use a pump. One participant noted, “One of the reasons why I didn’t want a pump at first was that it would be on me and then what should I do . . .?” The other participants agreed that this was a concern.

When the young people were asked about their thoughts on pregnancy, there were several consistent topics. As reflected in the following quotes, they expressed several concerns regarding the hereditary nature of diabetes, glycemic control and general health during pregnancy, and even whether pregnancy would be possible.

Diet was another often-mentioned challenge of having diabetes. On this topic, the young people naturally had many and varied experiences on topics such as fast foods, matching insulin to feed, and feelings of guilt around eating, as reflected in the following quotations.

The young participants also mentioned several times that relationships and reactions from people in the outside world to their having diabetes are of great importance. Some participants said they had supportive partners, even though the partners sometimes found it challenging because of a lack of knowledge of diabetes. As one participant put it, “. . . since I met him, my boyfriend has always followed with me to checkups at the hospital and the like . . . .” Conversely, there were also experiences of being rejected because of diabetes, as happened to one participant who said, “I met a guy who said, ‘I can’t do this. You have to use needles when taking insulin.’”

Whether young people chose to talk about their chronic disease in new contexts such as at school and work also varied. One participant reported having good experiences with talking about her illness, saying “. . . that I have diabetes, so they know if I suddenly get sick.” Another participant said, “When I started in high school or when I started at a new workplace, I didn’t tell anyone, but when people see my Libre [continuous glucose monitoring sensor], they often ask me.”

The participants also mentioned that having a continued relationship with their HCPs was of great importance. Specifically, it was deemed important to meet the same HCP each time, so the HCP knows the story behind the young person’s disease. The following quotes reflect this sentiment.

The participants in the group interviews emphasized that they greatly appreciated meeting other young people with diabetes and thus getting the opportunity to exchange experiences.

Also, there was general agreement that participants rarely used social media. One said, “I don't use Facebook groups. I don't think I can get anything out of it.” Some of the participants reported using digital apps related to diabetes. One said, “Sometimes I use the diabetes app to count carbohydrates . . . .” Another said, “I did download one [app] about blood glucose to get more control over it. But I only used it for 2 days. Then I deleted it. It was too difficult.”

Based on the information collected in the group interviews, four information sessions were arranged, and all patients with type 1 diabetes who were aged 18–25 years and received care from the specialized diabetes clinic at North Denmark Regional Hospital were invited. The themes of the sessions were 1) sexuality, heredity, and pregnancy; 2) alcohol; 3) glucose levels, blood samples, and nutrition; and 4) challenges of living with diabetes. Invitations were sent, but, as illustrated in Table 1, few answered. Those who did not answer the invitation were contacted by text message and subsequently by telephone. When asked why they had not signed up, answers included “Nice themes, but I forgot,” “I do not currently have the energy,” and “I do not see myself as a diabetes patient.”

After the information sessions, participants were briefly interviewed and indicated general satisfaction with the content presented. Participants emphasized that the presentations made them think and spurred good conversations with their partner afterward. As one put it:

However, participants also suggested that the presenters should be younger, that their relatives in attendance should be involved more, and that medical language should be avoided. One participant expressed it this way: “Perhaps a younger presenter would be better at engaging in a debate?”

The need for using daily language was expressed by one of the young women, who said that the speakers “used terms like amygdala, etc., which we did not understand . . . .”

When asked how HCPs should start a dialogue with young people with diabetes, the most common answer was that they preferred personal contact.

This qualitative study documented a need among young people with type 1 diabetes for information on topics such as alcohol, nutrition, sexuality, and pregnancy. However, despite this stated desire to participate in events providing information on selected topics, few people participated when such sessions were offered.

Participants expressed having a large knowledge gap regarding the effect of alcohol on their glucose levels, especially at a younger age and when they were first introduced to alcohol. A review on this topic documents that alcohol consumption among young people with type 1 diabetes is comparable to that among other young adults; however, the consequences of alcohol intake are great and more individuals with type 1 diabetes require acute hospital admissions because of alcohol consumption (14). Our observations align with a study by Sergel-Stringer et al. (15), which reported that young people with type 1 diabetes continue to need education about alcohol consumption and behaviors just as they need continued supervision and support from HCPs.

Participants expressed concerns regarding three different aspects of reproduction and pregnancy, including the heredity of diabetes, adverse pregnancy outcomes, and parental health. One participant feared the risk of passing type 1 diabetes on to her future children. This concern may originate from the widespread perception that diabetes is a very hereditary condition. Although this is true for type 2 diabetes, monogenetic diabetes, and polyglandular disease, type 1 diabetes in a female is only associated with a 1–4% increased risk of having a child with type 1 diabetes, and the corresponding risk is 6% for males (16). In comparison, the prevalence of type 1 diabetes in Denmark is high, at ∼0.5%. Thus, education on this topic might alleviate some of this concern.

One participant expressed a concern about the association between high blood glucose values and pregnancy outcomes. This is a relevant concern in that poor glycemic control during pregnancy is strongly associated with adverse pregnancy outcomes, and it is widely recognized that this challenge warrants preconception counseling and considerable support in achieving glycemic goals (17). Thus, this topic should be routinely included in annual appointments at the diabetes outpatient clinic before young women express a desire to become pregnant, to provide opportunities to reassure these patients and address issues such as whether it is possible to use an insulin pump during pregnancy.

Literature on the sexual lifestyles of young adults with diabetes is limited, but the fear of hypoglycemia during intercourse was a widely recognized concern. Those who experience heightened fear during intercourse often have a history of frequent mild or severe hypoglycemic episodes, particularly among insulin pump users. Taking precautions such as eating a snack is common among those who fear hypoglycemia, and, for some, this fear negatively influences their desire and sexual lifestyle (18).

However, this study revealed that participants’ main concern was related to their insulin pump and how to manage it during intercourse. Similar concerns have been noted in other studies, in which the majority of pump users disconnected their pump before intercourse to reduce the insulin dose delivered, but also because of worries about new intimate relationships, the pump getting tangled, and a feeling of being unattractive (19).

Adolescents with type 1 diabetes, especially girls, tend to have more body image issues than their peers (20). The presence of a pump attached to the body can exacerbate these concerns, leading some individuals to choose alternative treatment methods. Participants confirmed this issue, and some had even experienced rejections because of their pump. Discussing these issues with adolescents when considering treatment options is crucial because some may choose not to use a pump based on their concerns about its impact on their intimate relationships.

Surprisingly few studies evaluate knowledge of blood glucose control and the consequences of uncontrolled glucose in young patients with type 1 diabetes. Improving their understanding of the importance of optimal blood glucose and A1C levels and the effects of these measures on long-term consequences is vital. This study confirms the results of Patiño-Fernández et al. (21), who reported a lack of knowledge of the importance of glycemic control and the meaning and implication of the A1C test. In our study, participants conveyed diverse methods for addressing the challenge of carbohydrate counting, which varied depending on where a meal was consumed. This highly personalized approach aligns with previous research emphasizing the necessity for tailored and differentiated nutritional guidance for adolescents with type 1 diabetes (22).

Participants also expressed a preference for direct communication with nurses or doctors to obtain information, rather than relying on digital apps and virtual media. This preference is noteworthy given the substantial emphasis on the development of apps for individuals with chronic conditions such as diabetes. Interestingly, a recently published meta-analysis failed to demonstrate a significant reduction in A1C levels among young people with type 1 diabetes who were using apps to improve glycemic control compared with standard care (23).

There was very low attendance at the study’s group interviews and teaching sessions. It is well known that young people with type 1 diabetes often decline diabetes education programs (24–26). Potential participants were contacted via telephone and queried regarding the perceived relevance of the session themes. The majority indicated that all four themes were pertinent. However, when questioned about their nonparticipation, respondents cited reasons such as forgetfulness, a lack of identification with other individuals with type 1 diabetes, a preference for solitude, or fatigue and insufficient energy, highlighting the range of reasons for not attending diabetes educational programs (26). This finding indicates a need for a very individualized approach to gain young people’s attention in relation to education, which is confirmed by an International Society for Pediatric and Adolescent Diabetes guideline (27).

In qualitative studies, there are four key criteria: credibility, dependability, confirmability, and transferability. The research team exhibited proficiency and extensive knowledge in both the clinical treatment of adolescents with diabetes and qualitative study methodology, thereby enhancing the study's credibility.

The researchers’ preexisting understanding of the phenomena being studied served as both a strength and a limitation. The potential influence of the researchers’ personal experiences as diabetes specialists may have been a limitation. To avoid this limitation, an unbiased researcher without experience with diabetes conducted the interviews, and the research team engaged in a reflective and open-minded discussion during data analysis. The Standards for Reporting Qualitative Research checklist was followed to strengthen the validity and quality of the study (28).

Another limitation of the study was the relatively small number of participants for the interviews and the information sessions, which to some extent reduced its generalizability, although the quotes seem to confirm the findings in other studies.

The authors thank all of the study participants for sharing their experiences.

This study was funded by Marie Pedersen and Jensine Heiberg's Foundation, Center for Clinical Research, North Regional Hospital, Hjørring, Denmark, and the Steno Diabetes Center, North Jutland, Denmark.

No potential conflicts of interest relevant to this article were reported.

M.O.N., H.F., A.V., J.D., and D.M. conceived the study and designed the analysis. M.O.N., H.F., and D.M. collected the data and performed the analysis. M.O.N., H.F., L.B.L., A.P., J.D., and D.M. wrote, reviewed, and edited the manuscript. D.M. is the guarantor of this work and, as such, had full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.