“Lost in Transition”: Informational Needs of Sepsis Survivors and Their Relatives Across the Care Trajectory : A Qualitative Study

Background/Objectives: Sepsis survivors frequently experience long-term complications known as Post-Sepsis Syndrome. Many survivors and their relatives express ongoing dissatisfaction with the quality and accessibility of health information. Yet the specific informational needs and preferred formats remain insufficiently defined. To identify the informational needs of sepsis survivors and their relatives across different stages of illness and recovery. Methods: This qualitative study, conducted within the AVENIR project, included semi-structured telephone interviews with 12 survivors and 6 relatives in Germany. Interviews were transcribed verbatim and analyzed using qualitative content analysis according to Mayring. Results: Eighteen interviews highlighted phase-specific gaps in information. Relatives reported urgent needs for timely, comprehensible and empathetic communication during the ICU phase, often while under decision pressure. Survivors described limited capacity to process information during the acute phase and sought orientation only after cognitive and emotional stabilization. After discharge, both groups reported an “information vacuum”, marked by insufficient guidance on long-term physical and psychological consequences, rehabilitation, vaccination, and follow-up care. Many participants received no informational material, or only general or inconsistent information. Desired content emphasized basic sepsis knowledge, explanations of persistent symptoms, practical coping strategies, and navigation of support services. Preferred formats included peer support and repeated, personal conversations with healthcare professionals, complemented by trusted online and printed resources. Conclusions: Sepsis survivors and relatives experience notable, role- and phase-specific information deficits that extend from the ICU into long-term recovery. Timely, reliable, and accessible information may help reduce uncertainty, support coping, and strengthen autonomy for both survivors and relatives.