The nature of network formation of parents’ technology and health awareness in managing type 1 diabetes: childhood and adolescence

Parents of children with juvenile diabetes (type 1 diabetes [T1D]) must adopt an awareness of the condition and its technologies. Diabetes technologies (D-Techs) and health information are available to help parents manage, monitor and treat their child's condition. However, they must be aware of the health information and health technology that are available; and then be aware of how to adopt them for their personal way of use. In this thesis, this required health and technology information is labelled 'technology and health awareness' (T&HA). This thesis, therefore, seeks to further the adoption of T&HA as an innovation to help parents manage T1D in their child's childhood and adolescence. T&HA can be formed through interactions between parents and the human and socio-technical (non-human) actors around them. This thesis builds on a desire to view the nature of the formation of T&HA from the perspective of parents as their child is first diagnosed with T1D. There is often little understanding of parental T&HA adoption; therefore, this thesis aims to develop a model of the network of actors that form and influence T&HA in parents. It also reveals the repeating components of T&HA, presented as aspects that lead to the formation of the T&HA network, and it considers how the nature of T&HA changes with time after diagnosis. The main research question is: How is parental T&HA formed? This thesis adopts a qualitative research design in which the parents of T1D children in the Kingdom of Saudi Arabia (KSA) and Australia (AU) are interviewed. The adoption of actor-network theory (ANT) necessitates the need to conduct interviews with as many actors and interactions as possible to conceptualize the T&HA network formation. In this thesis, 58 semi-structured in-depth interviews are transcribed, translated and analysed using the ANT approach to guide the analysis. In this thesis, T&HA is adopted differently by parents and found as a result of educational activities. Eight human and socio-technical actors are included in this thesis. The three key actors that are considered the most influential in parents¿ T&HA formation are T1D, health-care team (HC-Team) and diabetes technologies (D-Techs). The second most influential group of actors includes the T1D community, the healthcare system (HCS) and family members (FMs). The third group of actors includes the public community and informatic sources (InSs). The four key aspects of awareness that lead to this formation are: 1) awareness of the disease, 2) technology awareness, 3) practical awareness and 4) social aspects of awareness. One aspect that emerged from this thesis is the idea of awareness changing with time after diagnosis. This awareness issue is represented in five translation-phases: emergence, orientation, conflict, reinforcement adoption and application, and uncertainty of T&HA. This thesis shows that parental T&HA is a complex issue and that common misconceptions and knowledge gaps exist among the parents studied. The actors responsible for forming T&HA include many who are outside the medical system. This thesis also discusses the adoption of T&HA using treatment technologies (e.g., insulin pumps) and management technologies (e.g., ICT tool development), as well as the deployment of monitoring technologies for T1D.