Exploring the lived experience of physical activity and technology for adolescents living with Type 1 Diabetes and parents as co-users

Background: Digital technologies for both type 1 diabetes (T1D) self-management and for physical activity are developing at pace. In both fields, for example, technology is moving towards using sensors, artificial intelligence, and algorithms to predict, monitor and track (and in some cases regulate) both movement and glucose variation. This automation offers an opportunity to significantly reduce human burden related to managing physical activity levels and controlling glucose levels safely. However, little is known about the nature of the use of technology to support physical activity (PA) of adolescents living with type 1 diabetes, and the role of parents/caregivers as co-users. Aims: To explore the lived experience of adolescents (and their parent caregivers) when managing both type 1 diabetes and physical activity and to understand better how technology can support these interactions. Methods: The PhD thesis presents three qualitative lived experiences studies with adolescents living with T1D (and their caregivers). The first study presents past experiences explored by asking adults to reflect on childhood physical activity whilst living with type 1 diabetes, using social media digital stories. The second study, focused on current interactions and experiences of physical activity, technology, and type 1 diabetes, using photovoice (photographs and narratives) written by the adolescents and their parents. The third study used online design workshops to explore the future needs and requirements of adolescents (and their caregivers) for how technology can better support physical activity while managing type 1 diabetes. Results: Across three qualitative empirical studies, key themes highlighted unmet needs of technology to support engagement, and participation of physical activity. Study 1 revealed psychosocial factors related to diabetes self-management which can affect physical activity behaviours. Peer support and education was established as an important aspect of intervention design, along with the requirement for person-centred educational content. Study 2 reported similar findings of psychosocial impact and challenges involving reliance and risk, whilst using immature technology, for both adolescents and their parent/caregivers as co-users. The need for more interoperable technology was established in study 2. Study 3 showed the need for interventions to encourage mastery and empowerment, for technology troubleshooting/risk management. Conclusion: Physical activity is a complex area for those who live with type 1 diabetes, and for those who are directly involved in the care of someone living with type 1 diabetes. This PhD highlights long-standing unmet needs regarding psychosocial care and appropriate peer support and education. Usability of technology for physical activity is affected by factors such as human burden in type 1 diabetes. Present technology does not yet meet the needs of adolescents and their parents/caregivers to participate in physical activity without added life risk or concern for health. A re-examination of current physical activity guidelines for adolescents living with type 1 diabetes is necessary and this should include socio-technical solutions to support participation in physical activity with type 1 diabetes. Adolescents and their parents/caregivers as co-users should be involved in the design of these physical activity guidelines to design meaningful, appropriate, and person-centred informed recommendations.