Type 1 diabetes mellitus (T1DM) is a chronic autoimmune disease that results in elevated blood glucose levels due to destruction of insulin-producing pancreatic islet β cells [1]. It is frequently diagnosed among children and adolescents, with the peak age group of diagnosis being 10 to 19 years [2,3]. Globally, the prevalence of T1DM among children and adolescents equates to over 1 million people currently affected [4]. Continuous glucose monitoring (CGM) has been found to have a positive impact on young people’s health-related quality of life [5,6]; therefore, technology-supported care approaches specifically for children and adolescents continue to be developed and improved [7]. Further adaptation of diabetes technology for use by young people and their caregivers can optimize diabetes management and outcomes from an early age. Insight into the experiences of young people and their caregivers of using devices to manage T1DM is essential to guide device developers and health care professionals to optimize the use and function of these technologies [8,9].

Disease management at an early age requires interdisciplinary care coordination between the child, the parents/family, the health care professional team [10], and others involved in care, such as teachers [11]. The diagnosis of diabetes at a young age is frequently accompanied by psychological stress in both the child or adolescent and parents related to the disease management demands (24 hours a day, 7 days a week), including the integration of complex treatment regimens [12] and fear of the consequences of poor blood glucose control, particularly hypoglycemia [13,14]. For adolescents, diabetes management can be a major challenge as a consequence of growing independence from parents, increasing complexity of daily activities (eg, managing diabetes technology), the added psychological demands associated with this age including peer pressure [11], and the pubertal physiological changes in the body.

To achieve optimal blood glucose control, adolescents with T1DM have to manage the following three key components: (1) glucose monitoring, (2) insulin delivery, and (3) means of communication between (1) and (2). Exogenous insulin administration into subcutaneous tissues by insulin injection or infusion by pump is informed by measurement of either blood glucose or subcutaneous interstitial fluid glucose. Such treatment is necessary to avoid short-term complications (eg, hypoglycemic events and diabetic ketoacidosis) and long-term complications (eg, diabetic retinopathy and nephropathy) [1,15]. For glucose monitoring, the choices include finger stick blood sampling for self-monitoring of blood glucose (SMBG) and/or continuous subcutaneous interstitial fluid glucose measurement with real-time access using CGM systems and/or intermittent access using flash glucose monitoring (FGM) systems. The choices for insulin delivery are multiple dose injections or continuous subcutaneous insulin infusion (CSII) by pump [16]. All combinations of glucose monitoring and insulin delivery devices are used in current practice [17]. Until recently, there were no direct electronic means of communication between the glucose monitoring and insulin delivery systems, such that a young person with diabetes or a parent/caregiver would need to make all decisions. New technology, however, has brought new means of communication between glucose sensing devices, people with diabetes, and insulin delivery systems [16]. Safety features, such as “suspend before low,” and glucose sensing-insulin infusion closed loop (CL) systems, can now be used. Hybrid closed loop (HCL) systems, in which the operating person provides some information into the otherwise CL system, such as carbohydrate intake amount that triggers an insulin bolus, are now commercially available. Table 1 provides a comprehensive technology overview [18-25].

Previous reviews on diabetes technology have mostly focused on the effectiveness or efficacy of the technology in adult populations [26-28], with some also including youth [29]. While various studies have focused on experiences with diabetes technology and particularly experiences with technology in young people with T1DM, reviews of such study findings are still lacking. Therefore, this systematic integrative review aimed to describe the breadth of experiences and perspectives on diabetes technology use among adolescents with T1DM and their caregivers.

This systematic literature review was based on the design synthesis methods of the Evidence for Policy and Practice Information Centre (EPPI-Centre) [30] and the integrative review methodology described by Whittemore and Knafl [31]. Integrative reviews enable the synthesis of data from diverse sources (qualitative and quantitative) to provide a broad and holistic understanding of the subjective and objective elements of a topic, including context, processes, and outcomes [31]. Integrated thematic analysis of data guided a narrative synthesis of the results. Data from qualitative, quantitative, and mixed methods studies were included in this narrative synthesis. The review was registered with PROSPERO (registration number: CRD42019125351).

In the true spirit of patient and public involvement in research, our team included academics, clinicians, three young people with T1DM, and two of their parents. All team members have contributed to this review, including identifying appropriate search terms, assisting with data extraction and data analysis, and providing comments on various drafts of the manuscript.

We searched PubMed, CINAHL, MEDLINE, Scopus, ProQuest, and Web of Science (search in title/abstract). The search string included the following keywords: (“Type 1 diabetes” OR “insulin dependent diabetes mellitus” OR “juvenile diabetes”) AND (“self manage*” OR “self measur*” OR “self monitor*”) AND (adolescent OR children) AND experienc*. We did not use the term “technology” or a similar term in the search string because this limited the results considerably (a comparison was conducted). The reference lists of included studies were searched to include studies that did not appear in the database search. The Cochrane software Covidence [32] was used to assist in the systematic review process from screening to data extraction.

Owing to the lack of age specification in many studies, we included studies with participants aged 12 to 25 years to ensure we captured adolescents, who were our primary interest. Studies that focused on parents’ or caregivers’ experiences of caring for a young person with T1DM were also included. We included peer-reviewed studies conducted in any country and in English language from 2009 to early 2019. We excluded randomized controlled trials (RCTs) owing to the integrative narrative scope of the review, which aimed to understand experiences rather than efficacy and effectiveness of technology. Other systematic reviews, conference abstracts, and grey literature were excluded.

Selected studies were reviewed independently by two researchers, based first on the title and abstract and then on full-text review. Conflicts were resolved through discussion with a third independent reviewer. A full-text quality appraisal was performed independently by two reviewers using the Mixed Methods Appraisal Tool (MMAT) [33].

We combined the study findings in a thematic narrative synthesis. Differences by technologies (CGM, cell phone glucose monitoring [CPGM], FGM, HCL, CL, insulin pumps/bolus advisors, and sensor-augmented pump therapy [SAPT]) were identified within the narrative. Owing to the integrative narrative character of our review, we did not conduct a meta-analysis or report statistical results. This is in line with the narrative synthesis method used in previous systematic reviews [34-36]. We used the quality assessment of the respective studies/papers (MMAT) to ensure credibility of the papers.

Of 528 identified references, 59 were selected for full-text review. A total of 17 studies were included. Of these, seven studies used qualitative research methods [37-43], four used quantitative methods [20,44-46], and six used mixed method designs [47-52], with only the quantitative component [50] or qualitative component [49,51] of three studies included (Figure 1).

Data were extracted to summarize study characteristics, including study descriptors, technology used, study aims, methods, main findings, and included themes (Multimedia Appendix 1). Data were coded into categories that were classified into eight themes following in-depth discussion and comparison. These themes were representative of common experiences described in the included studies. These provided a structure to systematically examine and discuss the evidence.

Included studies were from the United States (n=7) [20,37,39,41,44,50,52], United Kingdom (n=5) [38,43,47,48,51], Canada (n=2) [42,49], New Zealand (n=1) [40], France (n=1) [46], and Australia (n=1) [45]. Study methodology included in-depth or semistructured face-to-face interviews [38,40,42,43,48,49], surveys and questionnaires [20,44-48,50-52], focus groups [37,49], and analysis of online blog posts and comments [39,41]. Experiences with technologies examined included studies on CGM [38,39,44,49-52], FGM [46], CPGM [20], insulin pump therapy and bolus advisers [43], CSII [45], SAPT [42], and HCL/CL [37,48]. Some studies included experiences of using insulin pumps and/or CGM [40,41,47]. Study sample sizes ranged from 6 to 347, with participants comprised of parents and young people, with ages ranging from 4 to 24 years.

The consensus rating for all studies on bias was low risk, and thus, none of the 17 studies needed to be excluded because of high risk of bias (Multimedia Appendix 2).

People’s experiences with devices were described within eight themes that included expectations prior to device use on one hand and usage experiences on the other hand. The themes were as follows: (1) expectations of the technology prior to use, (2) impact on sleep and overnight experiences, (3) experiences with alarms, (4) impact on relationships and independence, (5) perceived impact on blood glucose control, (6) device design and features (quality: equipment and size; data and trends: visualization, accuracy, and calibration; invasiveness), (7) cost, and (8) user satisfaction (Multimedia Appendix 3).

The eight themes that emerged from our review of the 17 included studies illustrate the impacts of diabetes and the associated use of technology on various aspects of young people’s and their caregivers’ lives.

Our results showed that expectations prior to technology use could be split into expectations that could not be met with the current state of the technology (eg, artificial pancreas [37]) and expectations that were pretty much mirrored by the reported experiences (eg, improved safety). Experiences partly depended on the particular technology used. The majority of the papers focused on CGM and/or insulin pumps, with some reporting experiences specific to the respective devices (eg, CGM sensor accuracy/failure). However, as the results for CGM and insulin pumps are frequently reported together, further research is needed to examine if the difference in the devices is a key factor in user experiences.

Sleep disturbances due to alarms in youth and caregivers, and overnight management have been reported as major challenges in T1DM management in previous research [53], along with anxiety and fear of hypoglycemia in both youth and their caregivers [54]. Efficient and reliable hypoglycemia alert systems that do not disrupt sleep to an extent that affects overall management still have to be developed.

While parents are solely responsible for disease management of young children, the dynamics of care coordination change in adolescence, requiring fine balancing of parental support and involvement [11]. Adolescence is a time when children seek to achieve increasing independence and to separate emotionally from their parents, prioritizing relationships with their age peers. During this time, diabetes can impact the many important relationships of young people, including relationships with their parents, health professionals, teachers, and peers [20]. Our results indicate that automatized monitoring systems and insulin pumps offer potential for greater independence in adolescents and reduce the ongoing monitoring and management burden for parents [55]. At the same time, technologies can negatively affect the relationship between adolescents and their caregivers (eg, data sharing complicates relationships). Young people’s expectations of technology often diverge from those of their caregivers, and priorities are set differently (eg, independence versus reduced fear of hypoglycemia and improved sleep). Moreover, stigmatization [56] and judgement [57] by family members or peers can affect relationships and overall diabetes management. Thus, the nature of relationships between young people with T1DM and their caregivers, peers, and health professionals needs to be accounted for in the design of these technologies, particularly the relationship between youth with T1DM and their parents, which is characterized by a fine balance between autonomy and dependence (interdependence, also termed as transactional) [58]. Reliable devices are needed to engender trust and encourage practices that optimize diabetes management, avoiding risky behaviors that were reported by some participants in this review (eg, parents allowing higher than desirable blood glucose levels to avoid overnight hypoglycemia) [59].

Diabetes technology has been shown to be effective in improving metabolic control [6] in young people with T1DM at an early stage of the disease, preventing long-term complications (referred to as “metabolic memory”) [60]. Similar to studies of CGM, HCL, and CL in our review, previous research has found that technology can improve the quality of life of children and adolescents [6]. Technology holds potential to facilitate self-management in a way that reduces the effects of the disease on daily life, balancing daily activities with diabetes self-management demands and decreasing psychological pressure, stressors, and fear [61]. This holds great promise for adolescents, a high proportion of whom are distressed about diabetes and thus have suboptimal diabetes outcomes [62,63].

Successful diabetes technology use and improved self-care, which are reflected in improved blood glucose levels, can be achieved when individual empowerment is promoted [64,65]. Thus, a particular focus should be put on empowerment practices when designing diabetes technology for self-management. This can be achieved through user-centric design, which can aid in removing barriers to use at the same time, enabling the development of systems that are suitable for long-term use [66]. User expectations and preferences in technology design need to be accounted for (eg, reduction in device size and improved device quality as mentioned in our review).

Cost and funding issues hindered technology uptake and potential T1DM self-care in the included studies. While government subsidies are available for blood glucose meters in New Zealand, users in our review reported frequent changes by the government, which forced them to acquire newer and cheaper devices more prone to inaccurate measurements. Lack of insurance and/or government funding for CGM systems in Canada and the United Kingdom, and for CPGM systems in the United States [20] has been reported as an uptake barrier in the studies included in our review. FGM became reimbursable in France under the French National Health Insurance program in 2017 [46]. In Australia, subsidized schemes of CGM for children and adolescents have been expanded by the government to include FGM starting from 2020, but for many, these schemes cut out at the age of 21 years [67]. This shows that funding for new diabetes technology varies widely among countries, impacting technology uptake and use.

Despite a variety of reported challenges in using technologies to manage T1DM, overall, the studies in our review examining satisfaction with use reported high levels of satisfaction, and benefits were predominant. This is congruent with previous research that found new technology use is frequently accompanied with increased satisfaction with the technology when compared to multiple dose injections and SMBG [68].

Owing to its perceived benefits, there is a growing desire among the young T1DM community for automated CL “artificial pancreas systems” that integrate CGM with insulin delivery [69]. Yet, these expectations and desires are frequently not met in actual experiences with available technology. Even though available systems are a step toward automation of diabetes control, our review demonstrates that current technology is insufficient to provide fully reliable and sustainable automated systems that fulfill the expectations of young people with diabetes and their caregivers. The gap between “ideal” device systems, such as CL systems (artificial pancreas), and the currently available status quo of systems (eg, sensors and HCL systems) is a barrier that warrants further development. There is a need for improved and advanced diabetes technologies complying with the various user requirements outlined above.

The strength of this review lies in its unique focus on young individuals with T1DM, as this population is among those that experience what has been identified as “diabetic distress” and that undergo the most difficulty in adapting to diabetes needs and are most challenged in terms of glycemic variability [63].

The conglomeration of experiences and attitudes associated with currently available diabetes devices and technologies is a step toward a possible refinement of future diabetes technologies. Our review supports a move toward a tailored approach for individuals with T1DM to create technology that is robust, intuitive, and sustainable. An integrative approach involving adolescents, parents, health care providers, and teachers should be used to develop future technology and guide design experiments. Individuals with T1DM from diverse ethnic and socioeconomic backgrounds also need to be included in the co-design process to advance T1DM technology. This includes discussions of use and sharing of data. Our review has shown that while access to continuous data was valued by CGM users, there were also challenges in managing the amount of data. This resonates with a clinical evidence review of 22 studies that found that data could be perceived as overwhelming for some users [49]. Challenges like these must be addressed in collaboration with young people with T1DM and their caregivers.

While our main interest was in examining adolescents’ and their caregivers’ experiences of using devices, some included studies also involved younger children and older youth. It was not possible to exclude these data from our analysis, and at times, these have been included in our analysis.

We did not examine the grey literature, and thus, we might have excluded reports and evaluations that also included experiential data. We only examined studies reported in English, which excludes analysis of experiences in non–English-speaking countries and perhaps young non–English-speaking people’s experiences of using devices in English-speaking countries.

Owing to the rapid evolution of technology and associated changes regarding available devices and systems, there are challenges in evaluating a large number of experiences with a particular device.

Overall, the use of diabetes technology was found to be beneficial and to positively impact disease management for both young people and their caregivers. The included studies reported the advantages of diabetes technologies, such as improved self-management and diabetes outcomes, in young people associated with improved monitoring, data tracking, and data sharing, as well as decreased anxiety and psychological pressure in both parents and children. However, technology did not always live up to users’ expectations. Several barriers and challenges toward its use were reported, such as cost, the size and visibility of devices, and the intrusiveness of alarms, which drew attention to the fact that the user had T1DM. Continued use of diabetes technology was underpinned by its benefits outweighing its challenges, especially among younger people. Collaboration with young people and their caregivers is essential to ensure that future T1DM technologies meet their expectations and needs.