Type 1 diabetes mellitus (T1DM) is a demanding disease for young people, who struggle to learn to self-manage their condition during the transition from childhood to adulthood [1,2]. As young people gradually become more independent, they are expected to take on responsibility for T1DM management that includes administering daily insulin, measuring blood sugars, and counting carbohydrates to meet the recommended glycemic control target [3]. However, new lifestyles and physical, cognitive, and social changes challenge daily T1DM self-management routines [4]. This often results in impaired glycemic control [5,6], increased risk of acute complications [7], and early onset of long-term complications [8,9]. In addition, young people with T1DM often skip clinical visits, endangering their current and future health [5]. Flexible engagement and continuity with health care providers and ongoing support from parents are still needed [10,11]. However, current routine care [5,6] does not seem to meet young people’s need for T1DM self-management support [12-14].

Mobile health (mHealth) apps seem to be suitable tools for engaging young people in self-management by providing information and optimizing interaction with health care providers and parents [15-19]. However, most mHealth studies to date have been conducted among adults. A review of mHealth apps identified 2 apps only that support T1DM self-management among adolescents [20]. Cafazzo et al showed an improvement in the frequency of blood glucose monitoring when testing an app to facilitate feedback on automated blood glucose readings [21], whereas Frøisland et al demonstrated an increased understanding of applied knowledge when testing the combination of a picture-based diabetes diary and a text messaging service [22]. Finally, a recent study by Holtz and colleagues reported that a patient-centered mHealth app for adolescents with T1DM and their parents seemed to enhance their collaboration [18]. In conclusion, the use of apps appears to have the potential to improve current patterns of providing self-management support [19]; however, there is a lack of evaluation studies focusing on the effect of mHealth apps on young people’s management of their long-term conditions.

The Young with Diabetes (YWD) mHealth app was developed in a mixed-methods design based on a participatory and iterative approach [23] in collaboration with young people with T1DM, parents, health care providers, a team of health researchers, and information technology (IT) consultants. The goal of YWD was to provide a supplemental tool to support young people in developing T1DM self-management knowledge and skills during the transition from childhood to adulthood.

YWD is based on a family-centered approach [24] as recommended by transition guidelines [3,25,26] to improve self-management [1], defined as “an active, daily and flexible process in which youths and their parents share responsibility and decision-making for achieving disease control, health, and well-being through a range of illness-related activities” (p 92) [27]. Acquiring self-management in living with T1DM is a gradual process.

YWD comprises 8 main functions (Figure 1): (1) My Page enables users to contact their health care provider and write notes, (2) My Department contains information about diabetes outpatient clinics, (3) Chat Room offers peer-to-peer interaction, (4) Carbohydrate Counting, (5) Information about T1DM, (6) Tips Package provides daily T1DM tips, (7) To Parents provides information for parents on how to support their teen, and (8) Reminder. Further details are provided elsewhere [23]. The YWD content did not change during the test period.

Young people, their parents, and health care providers received the same version of YWD, except the Chat Room that was only available for young people. Anonymity in the Chat Room was encouraged with the use of nicknames.

The aim of this study was to explore YWD’s influence on young people’s self-management during a 12-month period.

A qualitative exploratory interview study was embedded in a 12-month randomized controlled trial (RCT) testing the effect of YWD on young people’s self-management skills. A purposive sample [28] of young people with T1DM who had completed the RCT study in the intervention group was recruited from January to the end of March 2017. They were invited to participate by the last author at the final data collection visit.

Young people and their parents were randomized to the intervention group (YWD, n=76) or control group (n=75), and participants in the YWD group downloaded the app on their mobile phone or tablet. PC-S provided an initial 10 min introduction of the app to the participant in person or by telephone. Participants were encouraged to use YWD between clinical visits and in collaboration with parents and health care providers. No prompts or reminders triggered app use. All young people had a mobile phone.

Health care providers were encouraged to use the app in the outpatient clinic. YWD-trained diabetes team members, including physicians, nurses, and dieticians (n=39) with at least 1 year of diabetes outpatient clinic experience, provided the YWD intervention as part of usual practice. Monthly face-to-face sessions were offered to refresh the use of YWD, and a telephone hotline was available in case of technical issues.

Individual interviews were conducted between January and March 2017 from 1 to 3 weeks after the RCT was completed. The interviews were conducted by GRH (an experienced female researcher who did not know the participants). GRH interviewed participants independently of their parents in their homes (n=19) or at school (n=1), using a semistructured interview guide (Multimedia Appendix 1) that included exploring individual reasons for variations in outcomes. The interview guide was inspired by an empowerment approach as defined by Anderson and Funnell [29]. The process of empowerment is defined as: “...the discovery and development of one’s inborn capacity to be responsible for one’s own life. People are empowered when they have enough knowledge to make rational decisions, control, resources to implement their decisions and experience to evaluate the effectiveness of their actions” (p 11) [29]. Interviews lasted for 35-60 min and were digitally recorded, transcribed verbatim, and checked for accuracy [30] by the first author. Transcripts were uploaded to NVivo software (QSR International version 11, QSR International Pty Ltd, Doncaster Victoria, Australia) to organize data and support the analysis.

Outcomes measures for the RCT included posttrial hemoglobin A_1c (HbA_1c) levels (primary outcome) and scores on 3 psychometric scales (secondary outcome): Perceived Competence in Diabetes (PCD) [31], Health Care Climate Questionnaire (HCCQ) [31], and Problem Areas in Diabetes (PAID-20) [32]. These scores, along with baseline characteristics, were used to characterize interview participants.

The study was approved by the Danish Data Protection Agency (no. 04015 NOH-2015-031) and performed in accordance with the ethical recommendations of the Helsinki Declaration. Ethical approval of interview studies by Research Ethics Committee is not necessary in Denmark (no. 15000468). An information leaflet to participants stated that data would be treated confidentially and anonymously and that they could withdraw from the study without consequences for their treatment and care at the outpatient clinic. Written consent was obtained from all participants and from parents if participants were younger than 18 years. After each interview, GRH spent some time with participants to make sure they felt comfortable having shared their experiences with app use.

Data were analyzed using a 6-phase thematic analysis provided by Braun and Clarke [33]: (1) familiarization with the data, (2) generating initial codes, (3) interpreting and sorting codes into themes, (4) reviewing themes for coherent patterns, (5) defining and naming the themes, and (6) producing the report [33]. GRH analyzed all interviews, generating initial codes and potential themes before discussing them with coauthors.

Subsequently, GRH and JW refined the categorization of codes into potential themes. Initially, this was an inductive process, followed by applying a more deductive approach during steps 3 and 4 to explore whether the app content and functions met young people’s needs [1,5]. Throughout all phases, constant checking of data extracts, codes, and themes against each other and the entire dataset was performed.

Credibility was addressed by researcher triangulation throughout the analysis, with GRH, PC-S, and GT having experience with T1DM and GRH, JW, and PC-S having experience with qualitative research. Feedback from the researchers was discussed at meetings until consensus was reached. Bias was diminished by having a coresearcher, who had not participated in the development of the app, to handle the analysis. Transferability was ensured by offering thick descriptions, dependability by providing quotes from informants, and confirmability by thoroughly describing the processes of sampling, data collection, and analysis [34].

The Chat Room proved to be the most important function of YWD. Finding peers who faced the same challenges in T1DM self-management was enlightening for all interview participants; they felt that:

Feelings of loneliness were relieved when young people became aware that their struggles were familiar issues among their peers. The possibility of contact with peers made their current challenges and worries easier to bear, as did knowing that they were not alone in having these burdens. Some participants had never met other young people living with T1DM, as illustrated here by a male:

The possibility of participating in chats or simply observing chat comments helped young people acknowledge that it was not always easy to self-manage T1DM. They realized that peers were familiar with their concerns, frustrations, and challenges, which helped reduce feelings of loneliness, as expressed by a female:

Feeling like everyone else and “being normal” (16-year-old female, ID9) occurred when young people were in the Chat Room. By reflecting on their peers’ ways of living, young people experienced normalization of T1DM into everyday life. This contrasted with the feeling of being different that often arose when spending time with friends without T1DM:

The Chat Room provided a safe, closed space where a spirit of companionship arose even though the young people did not know each other. A female described the experience:

Young people shared T1DM experiences in the Chat Room, which helped them gain new knowledge and skills for managing their disease . They became aware of the difference between advice and information they received at outpatient clinic visits and the insights and real-life knowledge they received in the Chat Room:

They experienced health care providers as being unable to provide the person-specific information they sought. On the contrary, health care providers often discussed T1DM in general ways, for example, by looking at blood sugar curves trying to figure out the cause of fluctuations. The young people found that sharing experiences with peers provided valuable and reliable person-specific information, such as how to manage hypoglycemia or deal with challenges when traveling. This knowledge improved their self-management competencies, as described by a male:

Young people became confident about trying out new ways of handling T1DM. They exchanged tips and tricks, such as precautions for driving, how to regulate blood sugar in relation to sports, and how to use the different functions of the insulin pump around meals to avoid fluctuating blood sugars.

Easy access to the Chat Room provided young people with opportunities to immediately change self-care practices. As a female described:

Young people gained practical knowledge that supported their participation in social life, such as going out with friends, while still feeling confident about taking care of their T1DM.

Exchanging experiences in the Chat Room provided them with real-life scenarios of risky situations, such as drinking alcohol. They did not receive this type of information from their health care providers. From their peers, they received concrete instructions about how to act and cope, as described by a female:

Most young people had not used the Information about...section, often because they felt they knew everything about T1DM after having been diagnosed years previously:

Therefore, they did not consider the informational part of the app as an option for obtaining advice about how to self-manage different situations in real-life contexts. However, they were convinced that the information function of YWD would be very useful for young people newly diagnosed with T1DM. As a male put it:

Young people felt safer living with T1DM knowing that all the information they needed about their disease was available in YWD. This gave them a sense of freedom and peace:

Before using the app, they had often had difficulty maintaining an overall perspective on their T1DM while taking care of school, work, and youth life. Ready access to information and knowledge made self-management easier:

For instance, some young people used links in the app to figure out how to count carbohydrates, some gained new perspectives by watching video self-portraits, and some reached out to peers or health care providers . YWD functioned as a kind of “back up” (16-year-old male, ID13) in almost all aspects of life with T1DM from minor concerns to acute issues. Young people viewed the app as a lifeline and felt safe just having it, as described by a female:

A few young people benefited from writing personal notes in the My Page function to organize their life with T1DM. Before using the app, they had expended a great deal of energy figuring out how their blood sugar responded to activities and food intake. By making notes about their reactions during different activities and in various circumstances, they gradually developed a personal guide to rely on in similar situations. This app function provided a parking lot for speculation and worry, helping ease their minds. As a female explained:

Young people appreciated that the app’s informational sections were easy to understand and focused on the most important aspects of T1DM. They had greater confidence in the information presented by YWD than in information they had previously located online. This gave them a sense of safety, as expressed by a male:

For some young people, YWD became a way to break the ice with their health care providers and parents. It supported them in sharing thoughts and feelings about their challenges of living with T1DM and asking for help.

Young people found that contacting health care providers through YWD was very informal, which facilitated writing messages:

Young people primarily wrote about practical things such as scheduling appointments or new prescriptions. They emphasized that health care providers did not introduce YWD during outpatient clinic visits or only referred to it superficially, such as by asking whether they had used the app. Young people had the impression that the app was not meant for collaboration. However, YWD made a profound difference in the few instances in which young people used it in collaboration with health care providers. For example, they used it to ask for help to lose weight or help to manage an eating disorder, topics that had not been discussed during clinic visits. A female described it this way:

Other young people used the “Unfinished sentences” in the My Page function as a way to break the ice and address unspoken difficulties in living with T1DM. They felt that doing so made it possible to talk openly about their thoughts and feelings:

By sharing their thoughts and feelings with health care providers, young people suddenly experienced more continuity in those relationships. This promoted sharing successes and failures and receiving ongoing support, which not had been possible before.

It motivated young people to improve their self-management because health care providers immediately responded to their actions. A female explained it this way:

YWD also became a way for young people to break the ice and start to share thoughts and feelings about the challenges of living with T1DM with their parents and to ask for help when needed. Some young people and their parents looked at the video self-portraits or at posts in the Chat Room, competed in the Carbohydrate Counting Quiz, or looked at the information sections separately or together. They then began to talk about topics that previously had been difficult to discuss openly, as in the example of a male who had talked about sex with his father for the first time while looking at the app together:

Young people described their parents as gaining a deeper and more nuanced perspective on the difficulties they faced in trying to self-manage T1DM. This changed the way parents and young people interacted about their self-management. Young people described their parents as seeming more eager to provide appropriate autonomy support, rather than admonishing or comforting them. As a girl describes:

Young people felt that their parents started to show greater confidence in them, and they had the impression that their parents suddenly took their situation and frustrations more seriously. In some cases, this led to changes in their parents’ point of view, including relaxing rules as they became more confident that the young person could handle, for instance, alcohol. A boy stated the following:

Despite the fact that young people appreciated YWD, some also expressed being “done with the app” after the first few months because no new information, quizzes, or video self-portraits were added during the trial. A male said:

Moreover, they noticed decreased activity in the Chat Room, which reduced their motivation for keeping the app. A male described the lack of motivating factors:

However, young people wanted to keep YWD, except for 3 male participants, aged 20 to 22 years, who no longer wanted it due to the static content. All participants had many suggestions for improvements to content and functionality to ensure more activity and make YWD more useful (Table 3).

This qualitative study provides insight into the mHealth app YWD as a motivating factor and a supplemental tool to self-manage T1DM. In particular, young people experienced interactions in the Chat Room, exchanging messages with health care providers, and looking at the YWD with parents as useful features. Our findings show the importance of helping young people communicate with like-minded peers to share feelings, practical knowledge, and experiences. In addition, the findings indicate that YWD is a promising supportive tool to change communication patterns between young people and health care providers during and between outpatient clinic visits and between young people and their parents. Finally, YWD could be a tool for health care providers to address sensitive topics in outpatient clinic visits. However, improvements are also needed to maintain young people’s motivation for self-management.

The Chat Room was found to be the most important part of the app, providing an online community for young people struggling with the same feelings, thoughts, and practical issues related to T1DM self-management. Young people felt they received support for self-managing specific diabetes situations and experienced diminished feelings of loneliness. Previous research has identified this kind of interaction as diabetes-specific social support [35], which is associated with reduced loneliness in living with T1DM [36]. Social support organized by health care providers as a kind of peer-to-peer support [37] has proven effective in preventing loneliness [38]. However, the literature on diabetes-specific peer support addresses a wide range of peer interactions and interventions [39,40], and the evidence is insufficient to determine the types of peer interactions, elements, and interventions most applicable to young people with T1DM [39]. YWD seems to have the potential to reduce loneliness, as compared with traditional outpatient clinical visits. Our findings emphasize that young people need help to connect with peers to share their experiences in a way that they cannot with parents, health care providers, and other social networks, as identified by Mayer et al [41].

In addition, untreated loneliness is known to contribute to diabetes distress [36,42]. Diabetes distress is high among young people emerging into adulthood [43]. In our study, young people experienced a slight increase in diabetes distress (PAID-20) scores (Table 2). The lack of effect on diabetes distress in our study could be explained by decreasing activity in the Chat Room during the trial period. Another potential explanation is that YWD alone does not provide sufficient support for young people with T1DM. Finally, it could be a result of the researchers bringing attention to the feelings of distress, supporting participants in identifying and reporting these feelings.

It is well known that health care providers play a significant role in supporting young people’s self-management [44]. However, not all health care providers feel confident using mHealth apps [45], and some may feel uncomfortable engaging with young people through technology [46,47]. This may explain why some young people perceived little interest from their health care providers in using the app collaboratively. Overall, YWD could not overcome barriers to frank discussions about sensitive topics, such as sex and alcohol, with which young people often struggle [38]. These topics should be addressed regularly in clinic visits [1]. However, the slight increase in HCCQ scores (Table 2) indicate that YWD may have the potential to complement health care providers’ traditional self-management support when used as an ongoing autonomous support in collaboration with the young people. In addition, YWD was able to slightly increase young people’s perceived competences in diabetes self-management identified by the PCD scores (Table 2).

Health care providers’ training in how to use YWD was very brief, lasting a single hour. This may not have been sufficient to help them feel confident in using the app in collaboration with young people and their parents [23]. Adaption and adoption of new technology require serious implementation work, including developing health care providers’ competence at performing new tasks and using the technology as intended [48]. Our study demonstrates that a critical need exists for guidelines on how to optimally train health care providers to use self-management apps as currently recommended [3,25,26].

Interestingly, we found that YWD use often changed interaction patterns between young people and their parents. The app created a platform for young people and parents to approach each other in a more constructive way and enable them to talk about sensitive topics by sharing video self-portraits or posts in the Chat Room or looking at the To Parents section. Parents often face challenges when trying to support their child in achieving self-management [18,49]. New ways of facilitating interactions that engage parents and young people during the transition from childhood to adulthood are needed [50,51]. YWD seems to have the potential to complement this process, but methods for encouraging collaborative use of mHealth apps by young people and their parents are needed; only 13 of 20 young people used YWD with their parents (Table 1). However, our findings suggest that combining an online space for exchanging peer support with support from health care providers and parents seems to facilitate more successful self-management, as also identified by Kowitt et al [52].

The findings highlight the importance of addressing communication about illness in any patients with long-term conditions by focusing on improving peer-to-peer support as well as supporting the digital communication with health care providers. However, there is a need to focus on health care providers’ competence at using mHealth apps. Given the many available mHealth apps, it may be worthwhile to introduce a course during health education programs, such as in medical and nursing schools, focusing on how to use technology collaboratively with patients. This is supported by a recent study [53] in which medical students reported improved understanding of the involved issues and procedures and greater confidence in conducting a telehealth consultation after a course in telehealth skills [53].

In addition, YWD may be a valuable tool for people with newly diagnosed T1DM as recommended by participants in the study. The informational functions of the app may be most useful at an early stage of the disease. We intend to incorporate young people’s feedback and suggestions for improvements in content and functionality (Table 3) before testing YWD in a group of participants with newly diagnosed T1DM. Because the age at diagnosis of T1DM may be different compared with participants’ age in this study, further revision would be of interest to meet the needs of younger participants.

YWD may have the potential to provide a generic model for supporting young people with other chronic conditions and their parents and helping health care providers to engage with young people in ways that provide ongoing support. Despite disease-specific differences, young people with chronic conditions and their parents share many commonalities [16].

One of the strengths of our study is the recruitment of participants with a variety of app use, age, gender, T1DM duration, affiliation with diabetes departments, and outcome measures. We consider this population as representative of the entire study group. In addition, patient-centered methods were used to assess YWD. Furthermore, the study used a rigorous qualitative methodology (thematic analysis), as described by Braun and Clarke [33], to provide rich and detailed data, rendering the freedom of combining an inductive and a deductive analysis to identify patterns within data. A limitation is the short-term nature of the study (app use range 3-64 days) and the varying levels of health care provider collaboration. Furthermore, we did not report parents’ and health care providers’ perspectives on using YWD and its impact on young people’s self-management. Currently, parents’ and health care providers’ perspectives are being explored in questionnaires and focus group interviews, respectively, to make a more informed case about the implications of YWD on all groups of users.

The YWD app appeared to be a motivating factor in young people’s self-management of T1DM. In particular, peer-to-peer support, exchanging messages with health care providers, and looking at the YWD with parents were useful in supporting self-management. YWD changed communication patterns between young people, health care providers, and parents and provided young people with ongoing support. YWD is not effective as a stand-alone intervention, but it seems to have the potential to help young people, parents, and health care providers optimize T1DM self-management. A need exists to refine YWD according to users’ suggestions, to optimize and standardize health care providers’ use of YWD, and to further investigate how the app can be used collaboratively by young people, their parents, and health care providers.