JMIR Publications

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:

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 healthcare professionals involved in ICU recovery. Between April 2022 and February 2026, and guided by the CeHReS Roadmap consisting of five phases, data collection activities were conducted iteratively, with findings from each phase informing subsequent development steps and being revisited when necessary. The primary outcomes were the specification and refinement of core components to build a digital self-management intervention aligned with stakeholder-identified values and contextual requirements. Secondary outcomes included 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 67 accounts with 85 users logging in at least once. Usage was primarily concentrated on the information tiles, suggesting that users mainly accessed 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. By addressing informational, emotional, and practical needs, the intervention offers a scalable approach to complement existing ICU recovery pathways.