Participants were recruited between September and November 2022, primarily through digital advertisements on social media and completed a web-based survey (Survey&Report by Artisans media). Additionally, study advertisements were done at associations for people with diabetes in Sweden and a regional hospital. The survey included screening questions on age, diabetes type, and pregnancy status to determine participants’ eligibility. The survey automatically closed if any of the exclusion criteria (age <18 years, diabetes type 2, or pregnancy) were met. More information on the survey recruitment strategy is available in a previously published paper [25]. Two open-ended questions in a web-based survey, which was part of a larger study [25,27], provided data to this paper. Although paper surveys were available, their uptake was minimal, and none of the respondents provided answers to the open-ended questions.

The phrasing of the interview questions was inspired by the critical incident method [28,29]. The questionnaire began by asking participants to describe an experience where they were satisfied with their use of the mHealth app for diabetes self-care, and then to describe an experience where they were dissatisfied. They were then asked to relate details about the particular incident or situation and describe how they managed it, how it ended, and what they learned. Phrasing the questions this way helped participants recall and describe their positive and negative experiences using DHTs for diabetes self-care through personally relevant incidents and behavioral details [30]. The questions were face-validated among 9 adults with type 1 diabetes and 4 diabetes nurses, where after minor changes were made.

An initial review of the web-based survey data was conducted by the first (DAS) and last (AN) authors to assess the need for further enrichment and updates, which was deemed necessary. Thus, 2 group interviews were conducted between August and September 2024. The participants for the group interview were recruited via digital advertisements through Facebook and Instagram. The interested participants could leave their informed consent and contact details through a digital link (Survey&Report by Artisans media) in the advertisement. The group interviews included 2 and 3 participants each. The participants were sent the interview invitation through email. The video conferencing tool Zoom Workplace was used to conduct the interviews. The end-to-end encryption feature in Zoom was activated to secure the room and ensure data privacy.

A semistructured interview guide, developed based on the open-ended questions in the survey study, was used for the interview. The questions were phrased slightly differently based on the data from the survey in order to include digital devices along with mHealth apps. Digital devices were added as survey answers showed that participants could not differentiate the functions of mHealth apps from those of their digital devices. The interview began in a similar way to the survey questionnaire, with an overarching question asking them to describe experiences of using mHealth apps and digital technology to manage type 1 diabetes. Similar to the questionnaire, this was followed by sub-questions. Follow-up questions were asked as needed: Can you tell me more? Can you elaborate on that? AN (PhD in nursing science and associate professor) was the main interviewer and has previous experience of conducting qualitative interviews and knowledge in the field of digital health innovations. DAS, a PhD student, acted as the observer and note taker. Both the interviewers were female, registered nurses and had no previous relationship with the participants. The interviews, which included only the interviewers and participants, lasted between 60 to 90 minutes and were audio recorded using a separate dictaphone. The audio recordings were transcribed verbatim by a transcription agency, which had a data processing agreement with Karlstad University. The interview transcripts were not returned to the participants for correction or comments.

The participants experienced using DHTs in diabetes self-care as a balancing act between feeling empowered and feeling exasperated. This is described under five categories: promoting autonomy in daily life, self-awareness through collaborative learning, feeling secure, tackling technical challenges and need for support, and navigating the burden of psychosocial challenges. DHTs were experienced as empowering as they helped people take control over their lives by promoting autonomy in daily life, self-awareness through collaborative learning, and making them feel secure. However, participants have also described having to tackle technical challenges and the need for support and navigating the burden of psychosocial challenges, which left them feeling exasperated. Thus, participants conveyed an experience of having to balance between feeling empowered and feeling exasperated. The exasperating experiences prevented them from experiencing a full sense of empowerment with DHT use. Textbox 1 depicts the various categories and Table 3 depicts subcategories and count of codes within each category.

A large number of participants with type 1 diabetes described their experiences of tackling technical challenges and need for support. They described hassles with DHT malfunction and usability, glucose value inaccuracies, unreliable alarms and warnings, and health care support need. Tackling technical challenges with DHT and the need for support led to exasperation.

DHT malfunctions experienced by participants ranged from software-related issues such as failure in updating values and display inaccuracies to device dysfunctions. Unreliability in alarms and warning systems was also described, including false alarms and failing to alert due to either DHT malfunctions or design flaws. Alarms were also experienced as developmentally immature when they could not be personalized or overridden. Identified causes of DHT malfunction described by the participants were either related to sensor issues, dysfunctions when approaching end of lifespan of device parts, incompatibility with extreme external temperatures, physiologic changes (eg, infection) or diet causing rapid glucose fluctuations, device connectivity issues with mHealth apps or other connected devices, lack of device compatibility with other devices or newer software, and usability issues (eg, navigational difficulties and limited personalization options).

Participants experienced disruptions in connected device functions (eg, AID system), lack of access to glucose values, and need for reliance on nonapproved apps due to technical challenges. In addition, participants reported technical challenges as contributing to a cascade of poor self-care decisions—beginning with uncertainty around glucose values and insulin dosage estimation, which led to incorrect dosing, potentially resulting in compensable or noncompensable hyperglycemia or hypoglycemia, and in some cases, the need for emergency care. Participants described eventually learning to navigate the technical challenges by using DHTs as a guide and relying on their own body symptoms and sensations for accurate feedback. When a mismatch in DHT information and bodily symptoms was noticed by participants, it was counterchecked with glucose graphs or with blood glucose monitors. Some malfunctions required the participants to correct underlying causes such as relieving pressure on devices and change of sensor or parts of insulin delivery devices. The latter, however, was reported by the participants as requiring backup material, being uncomfortable if in public eye, irritating to the skin, and required waiting out the “warm up” period. To keep using the DHTs, participants narrated the need for relentlessly being in control through careful organization and preparation. Even then, the DHTs could still fail, causing disruptions to daily routines. DHTs were described as “a shackle” when preventing spontaneous activities due to a lot of backup need.

Participants felt that these technical challenges induced value speculations, counterchecks, wrong self-care interventions, and subsequent correctional measures that were unnecessary and inconvenient, disrupting routines, stressful, tiresome, and undermining trust in DHTs. The absence of prompt technical assistance was described by participants as a factor contributing to disengagement and eventual discontinuation of the DHT. Some participants shared that they received minimal support from healthcare for DHT use, often turning to social media for help. Technical challenges frequently occurred outside of health care providers’ consultation hours, highlighting a lack of around-the-clock support. Using DHTs with minimal health care support was compared by participants to that of a “technical sport—a sport requiring knowledge of technology, extensive exploration and adaptation without which you lag in the race.” Participants expressed a need for support in better understanding the technology and selecting the most suitable option from those available. Participants felt that adequate support would prevent them from feeling chained to ill-fitting DHTs. Some found it helpful to have consistent contact with the health care personnel who recommended the DHTs. However, participants voiced that this level of support requires health care professionals to maintain up-to-date knowledge of available DHTs. Participants also described a lack of knowledge among health care personnel in primary care and home health care when it came to caring for people with type 1 diabetes using DHTs.

Participants with type 1 diabetes felt that DHTs promoted autonomy in daily life by aiding glycemic control, easing insulin dosing, and prompting timely intervention through alarms and warnings. Participants described this as being achieved through frequent glucose checks and tracking, decision support to intervene in time through alerts, alarms, and warnings, and assisting with insulin administration in everyday life as well as during special situations (eg, infection or while having a multicourse meal). In comparison to a regular finger prick test with blood glucose monitor, participants felt that DHTs promoted autonomy by making self-care monitoring easier, frequent, discreet, pain-free, and always accessible. Through graphs, trends, and alarms, participants described receiving a comprehensive and uninterrupted overview of glucose values or insulin dose, which was unattainable through occasional finger prick tests or glycated hemoglobin (HbA_1c) tests. This comprehensive and uninterrupted diabetes monitoring and management was identified by participants as helpful to keep glucose values in normal range and improve “time in range.” Participants mentioned this as reducing worry of hypo- or hyperglycemia while being engaged in various activities or work and at night. Therefore, DHTs were experienced as a lifeline working around the clock, preventing complications or disruptions to daily routines. By giving enough time to intervene to correct glucose levels, they provided participants with the freedom of activity. Participants described that DHTs enabled them to live their lives without having to think too much about their disease.

Participants with type 1 diabetes voiced that DHTs contributed to a greater self-awareness about their disease and the self-care strategies required. Achievement of this increased self-awareness was described by participants as being facilitated by participants’ collaborative engagement and learning with DHTs. The participants described this experience under the subcategories: understanding factors affecting glucose variability, implementing self-care changes based on value assessment, and easing discussion on diabetes self-care with health care personnel.

DHTs were experienced as helping participants learn about diabetes and the impact on glucose levels of various factors such as exercise, insulin dosing, stress, menstrual cycle, and food, thereby facilitating self-care. Participants described achieving this learning through the DHTs’ graphical display and trends, which help find patterns, recurring events, habits, and reason for deviant values. The insight gained helped participants make self-care changes and prevent glucose variability. Alarms and predictions helped them learn differences in body symptoms with deviant glucose values. In contrast to periodic finger prick testing using blood glucose monitors, DHTs helped users learn to time the effects of insulin and food. By aiding participants with analyzing and evaluating the interplay between various factors influencing glucose levels, DHTs helped lower HbA_1c. Participants also felt that the uploaded or shared data from the DHTs made it easier to discuss diabetes self-care with health care personnel even without in-person visits. Graphs from devices were reported to act as a discussion tool in health care meetings.

Experiences of psychosocial challenges while using DHTs were also described by participants with type 1 diabetes, under subcategories psychological impact and response to DHTs and a source of social awkwardness. Participants described feeling compelled to maintain values within the target range with DHT use, making them fixated on achieving the perfect “time in range” values and overly trusting DHTs above bodily symptoms. Participants felt that this led to stress and a sense of self-competition, particularly during the initial phase of technology use. Over time, some participants learned to ease this pressure and place less importance on staying within the perfect range. Such trust in DHTs above bodily symptoms caused unnecessary anxiety in participants about DHTs failing to work or when seeing false “in range” percentages. The obsession to remain in target range and high focus on DHTs was also described by participants as leading to overcorrection, unnecessary interventions, incorrect insulin dosing, fluctuating values, and unwanted consequences. Additionally, it could lead to values, alarms, and reminders taking over every part of participants’ life. DHTs were thus experienced as disturbing peace and quiet, causing enormous stress and frustration, which eventually led to technology fatigue. Taking a day off DHTs helped some participants realize that they are no more than aids to diabetes self-care.

DHT can also cause social hassles and awkwardness. Participants described frustration over uneducated comments from others about DHTs as well as 1-sided (ie, only the positives) demonstrations of DHTs on social media. Another problem described was that different counties offer different DHTs, making it difficult to move to a different county after choosing a certain DHT. Placement and access of DHT while in public places or events were also experienced as challenging due to physical exposure. One participant felt undignified when people showed aversion and judgment toward DHT alarms. Lack of customization like snoozing, overriding, or volume adjustments for alarms was described by participants as causing embarrassment, disturbance in public places, and in extreme cases, discontinuation of DHT.

Participants with type 1 diabetes experienced feeling secure when using DHT for diabetes self-care. They described this under experiencing stability in their lives and safety and control over their disease with DHT use. Participants reported a sense of safety since alarms would alert them to deviant glucose values in work-related meetings and at night when asleep. This, in turn, gave them a feeling of being in control, stability, and reduced stress about complications such as diabetes-related coma. Some participants described how the follower function saved their lives by alerting their relatives to intervene in the event of low blood sugar, which went unnoticed by the participants.