Participatory Development of a Digital Self-Management Intervention for Intensive Care Recovery: Multimethod Study

Abstract Background Despite promising developments in eHealth, a critical gap remains in understanding how to design and implement digital self-management interventions that effectively align with users’ needs and the complex context of recovery after treatment in the intensive care unit (ICU). Objective This study aimed to develop and iteratively refine a digital self-management intervention for post–intensive care recovery and to explore related user experiences and usability among individuals with lived ICU experience. Methods A multimethod participatory development process was used including individuals with lived ICU experience (both survivors and family members) and health care professionals involved in ICU recovery. Between April 2022 and July 2026, guided by the Center for eHealth Research and Disease Management Roadmap consisting of 5 phases, data were collected through inspiration sessions and feedback rounds, individual interviews, usability testing, and pilot use, with qualitative data analyzed thematically and quantitative data analyzed descriptively. Findings from each phase informed the subsequent development steps and were revisited when necessary. The study focused on the specification and iterative refinement of the intervention’s core components based on identified values and contextual requirements, complemented by preliminary indicators of usability and descriptive usage metrics. Results Through stakeholder engagement, key functionalities were defined, including structured recovery information, easy 24-7 access, and guidance in navigating care. Two digital self-management modules, the ICU-RecoveryPointer for ICU survivors and the ICU-FamilyCoach for family members, were developed comprising (1) structured information aligned with the different phases of ICU recovery, (2) concise information tiles with layered content for more in-depth background information, (3) patient-reported e-monitoring features, (4) tailored suggestions addressing recovery challenges and emotional processing, (5) an e-diary with a timeline summary function, and (6) a comprehensive content library. During the pilot phase, the ICU-RecoveryPointer reached 33 linked accounts, with 27 users logging in at least once, whereas the ICU-FamilyCoach reached 66 accounts, with 90 monthly unique-user observations. Usage was primarily concentrated on the information tiles, suggesting that users mainly accessed the informational content within the modules. Conclusions Two digital self-management modules were designed through a participatory and iterative development process, supporting individuals with lived ICU experience during the recovery trajectory. Preliminary user experiences and usage data provided initial insights into usability and engagement, while also highlighting the need for further evaluation before broader implementation.