The incidence and genetics of cystic fibrosis.

Abstract

<h3>Abstract (unstructured)</h3> An important strategy to understand young people’s needs regarding technologies for Type 1 Diabetes Mellitus (T1DM) management is to examine their day-to-day experiences with these technologies. This study aimed to describe T1DM youth and their caregivers’ experiences and preferences regarding insulin pumps, sensor technologies, and related communication technologies based on a hybrid theoretical foundation, as well as to describe derived ideal device characteristics. Sixteen face-to-face interviews were conducted with young people and their parents. Data analysis included data-driven thematic analysis followed by theory-driven analysis (Unified Theory of Acceptance and Use of Technology; value sensitive design). Initial themes derived from the interviews included aspects of self-management, device use, technological characteristics, and feelings associated with device types. Interview findings were congruent with factors from the two theories. Discussions around ideal devices focused on reliability, flexibility, and automated closed loop systems that enabled an independent life for young people and alleviated parental anxiety. Reality deviated from expectations, with inaccuracy problems and technical failures reported. Technologies for diabetes self-management require continual advancement to meet the needs of young people with T1DM and their caregivers. Understanding experiences and challenges with devices enabled us to identify theory-supported device characteristics useful for the designing of improved technologies. <h3>Extended abstract (structured)</h3> <h3>Background</h3> An important strategy to understand young people’s needs and preferences regarding technologies for Type 1 Diabetes Mellitus (T1DM) management is to examine their day-to-day experiences with these technologies. <h3>Objective</h3> This study aimed to describe T1DM youth and their caregivers’ experiences and preferences regarding insulin pumps, sensor technologies, and related communication technologies based on a hybrid theoretical foundation, as well as to describe derived ideal device characteristics. <h3>Materials and Methods</h3> Sixteen face-to-face interviews were conducted with young people with T1DM and their parents about their diabetes technology use. A combination of data-driven thematic analysis in a first stage, and theory-driven analysis in a second stage was used to incorporate in-depth study analysis and existing theoretical literature. Relevant literature included technology adoption (Unified Theory of Acceptance and Use of Technology/UTAUT) and value sensitive design (VSD) models. Based on this approach ideal device characteristics for young people with T1DM were summarized. <h3>Results</h3> Initial themes derived from the interviews included aspects of diabetes self-management, device use, and specific device-related technological characteristics and feelings associated with the specific device types (continuous glucose monitoring, insulin pump, flash glucose monitoring). The interview data delivered information congruent with all UTAUT and VSD factors except for one (privacy). Discussions around ideal diabetes devices focused on reliability, flexibility, and automated closed loop systems that enabled an independent and normal life for adolescents, and alleviated parental anxiety. However, in line with the previous systematic review, the interview analysis showed that reality deviated from these expectations, with inaccuracy problems reported for continuous glucose monitoring devices, and technical failures occurring in both continuous glucose monitoring devices and insulin pumps. <h3>Conclusions</h3> UTAUT and VSD approaches were found useful as a combined foundation for structuring our study findings. Technologies for diabetes self-management require continual advancement to meet the needs and expectations of young people with T1DM and their caregivers. Understanding their experiences, as well as challenges with the devices, enabled us to identify theory-supported ideal device characteristics that can be useful in the designing and developing of improved technologies.