No abstract

Background Despite a large number of clinical trials aiming at evaluating the digital self-management of chronic diseases, there is little discussion about users’ experiences with digital approaches. However, a good user experience is a critical factor for technology adoption. Understanding users’ experiences can inform the design of approaches toward increased motivation for digital self-management. Objective This study aimed to evaluate the self-management of cystic fibrosis (CF) with a focus on gastrointestinal concerns and the care of young patients. Following a user-centered design approach, we developed a self-management app for patients and parents and a web tool for health care professionals (HCPs). To evaluate the proposed solutions, a 6-month clinical trial was conducted in 6 European CF competence centers. This paper analyzes the user acceptance of the technology and the benefits and disadvantages perceived by the trial participants. Methods A mixed methods approach was applied. Data were collected through 41 semistructured qualitative interviews of patients, parents, and HCPs involved in the clinical trial. In addition, data were collected through questionnaires embedded in the self-management app. Results Support for enzyme dose calculation and nutrition management was found to be particularly useful. Patients and parents rapidly strengthened their knowledge about the treatment and increased their self-efficacy. Reported benefits include reduced occurrence of symptoms and enhanced quality of life. Patients and parents had different skills, requiring follow-up by HCPs in an introductory phase. HCPs valued obtaining precise information about the patients, allowing for more personalized advice. However, the tight follow-up of several patients led to an increased workload. Over time, as patient self-efficacy increased, patient motivation for using the app decreased and the quality of the reported data was reduced. Conclusions Self-management enfolds a collaboration between patients and HCPs. To be successful, a self-management approach should be accepted by both parties. Through understanding behaviors and experiences, this study defines recommendations for a complex case—the demanding treatment of CF. We identify target patient groups and situations for which the app is most beneficial and suggest focusing on these rather than motivating for regular app usage over a long time. We also advise the personalized supervision of patients during the introduction of the approach. Finally, we propose to develop guidance for HCPs to facilitate changes in practice. As personalization and technology literacy are factors found to influence the acceptance of digital self-management of other chronic diseases, it is relevant to consider the proposed recommendations beyond the case of CF.

In this paper we address the institutional context of the police response during the 22 July terror attacks in Norway. Our analysis shows how institutionalized informal practices, established over time, influenced the police response during the attacks. The response presented challenges in terms of management of actor complexity (the number of actors involved and the need for coordination) and uncertainty. The importance of these dimensions is discussed based on the police's response during the terror attack in Oslo in 2011. Our analysis of the course of events shows that the resources dedicated to strategic management were marginalized during the event and that insufficient attention was directed towards intelligence and investigation. This contributed to an ineffective police effort to track and capture the perpetrator and prevent or respond to the secondary attack. This is similar to what is often found in hindsight investigations of crises. The aim of this paper is to contextualize and analyze these findings in light of the institutional context of the Norwegian police. Reports from exercises before and after the terror attack indicate that the marginalization of strategic work, intelligence and investigation has been and remains a persistent problem in the Norwegian police. Interviews indicate that there are informal aspects of the police organization regarding status and established conventions of what "proper police work" is about that explain how the observed inadequacies are deeply embedded in the organization.As such, the paper is not a study of a failure in crisis management, but rather the institutional patterns of action that make actions and decisions stand out as meaningful for the actors involved in dealing with situations of high complexity and uncertainty.

No abstract

No abstract