Experiences of Young People and Their Caregivers of Using Technology to Manage Type 1 Diabetes Mellitus: Systematic Literature Review and Narrative Synthesis

Abstract

Background In the last decade, diabetes management has begun to transition to technology-based care, with young people being the focus of many technological advances. Yet, detailed insights into the experiences of young people and their caregivers of using technology to manage type 1 diabetes mellitus are lacking. Objective The objective of our study was to describe the breadth of experiences and perspectives on diabetes technology use among children and adolescents with type 1 diabetes mellitus and their caregivers. Methods This systematic literature review used integrated thematic analysis to guide a narrative synthesis of the included studies. We analyzed the perspectives and experiences of young people with type 1 diabetes mellitus and their caregivers reported in qualitative studies, quantitative descriptive studies, and studies with a mixed methods design. Results Seventeen articles met the inclusion criteria, and they included studies on insulin pump, glucose sensors, and remote monitoring systems. The following eight themes were derived from the analysis: (1) expectations of the technology prior to use, (2) perceived impact on sleep and overnight experiences, (3) experiences with alarms, (4) impact on independence and relationships, (5) perceived usage impact on blood glucose control, (6) device design and features, (7) financial cost, and (8) user satisfaction. While many advantages of using diabetes technology were reported, several challenges for its use were also 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 type 1 diabetes mellitus. Continued use of diabetes technology was underpinned by its benefits outweighing its challenges, especially among younger people. Conclusions Diabetes technologies have improved the quality of life of many young people with type 1 diabetes mellitus and their caregivers. Future design needs to consider the impact of these technologies on relationships between young people and their caregivers, and the impact of device features and characteristics such as size, ease of use, and cost.

Diabetes Technology Experiences of Young People Living with Type 1 Diabetes Mellitus and their Parents: Hybrid Theoretical Foundation Guided Analysis

“…We compared the current study findings with a previous systematic integrative review of 17 studies on young people and their caregivers' experiences of using technologies to manage T1DM [8]. The review identified eight themes 1. expectations of the technologies prior to use, 2. perceived impact on sleep and overnight experiences, 3. experiences with alarms, 4. impact on independence and relationships, 5. perceived usage impact on blood glucose control, 6. device design and features, 7. financial cost, and 8. user satisfaction.…”

“…Messer [28] argues that with new technological advancements, expectations about new diabetes technologies are high in some individuals at first (idealism), but then fall when reality does not match these expectations. The systematic review [8] reported that some of these expectations related to the self-sufficiency of these technologies, resembling an actual artificial pancreas system which can make life easier and enable normality, also reducing the burden of the disease. Similar wishes and expectations were expressed in the interviews, relating for example to fully automatized systems ( factor connectivity ).…”

“…Moreover, technology experience can enrichen co-design approaches using feedback received based on technology use [7]. The importance of understanding experiences with diabetes technologies in young people with T1DM has led to a variety of studies conducting research on this topic [8]. The majority of these studies chose exploratory research designs to investigate experiences with diabetes technologies in young target groups [8].…”

“…The importance of understanding experiences with diabetes technologies in young people with T1DM has led to a variety of studies conducting research on this topic [8]. The majority of these studies chose exploratory research designs to investigate experiences with diabetes technologies in young target groups [8]. To follow up and to expand this existing body of research, available theoretical knowledge from models and theoretical approaches can be combined with exploratory research approaches.…”

Managing type 1 diabetes during the COVID-19 pandemic is a team effort: a qualitative study of the experiences of young people and their parents

“…While the prevalence of COVID-19 infection in this community was low at the time of this study, the need to engage with telehealth existed, providing an excellent opportunity to examine patients’ perspectives of this in relation to a large interdisciplinary team. The rigour and relevance of our study were strengthened through the involvement of young people with T1DM and their parents in our research team, 38 39 who contributed to the development of the interview guide, data analysis and drafting the paper. While having access to a pool of young people and parents interested in research aided recruitment, a potential limitation is that participants likely reflect a highly engaged group.…”