Navigating the Intensive Care Unit-to-Home Trajectory: A Qualitative Study of Relatives' Experiences of Life During and After Critical Illness

Abstract

Background: Intensive care unit (ICU) admissions are highly stressful for both patients and their relatives. Many patients develop post-intensive care syndrome (PICS), which includes physical, mental, cognitive and social impairments complicating recovery. Relatives involved in the critical illness trajectory may develop PICS-family (PICS-F). Despite healthcare support, relatives continue to experience stress. Understanding their experiences is essential to improve family-centred care during and after ICU.

Aim: The aim of this study was to explore relatives' experiences of being a relative throughout the pathway from the ICU to home.

Study design: This qualitative study employed a phenomenological-hermeneutic approach inspired by Ricoeur. We conducted semi-structured interviews with 15 relatives during the ICU stay and at three- and six-month follow-ups. The Consolidated Criteria for Reporting Qualitative Research checklist was applied.

Results: Three themes emerged: (1) Relatives during the ICU-living in two worlds with fear of missing out: Relatives felt torn between hospital and home, overwhelmed by stress and fear of missing crucial moments; (2) Relatives in transitions-a new stage marked by uncertainty: The relatives assumed major responsibilities with limited information; and (3) Returning home-a prolonged, seemingly never-ending journey: Caregiving continued as the relatives adapted to a changed everyday life. Across all phases, relatives described a heavy burden, vulnerability and emotional strain.

Conclusions: Relatives navigate two demanding worlds-the high-stress ICU environment and home-resulting in exhaustion, stress and isolation. Transitioning home brings uncertainty, as caregiving roles expand with little support. Structured, long-term support and family-centred care are essential to reduce anxiety and improve outcomes for patients and relatives.

Relevance to clinical practice: Relatives require structured, continuous support and clear communication throughout ICU recovery. Future research should develop strategies to reduce the burden of PICS-F and enhance family post-ICU support.

Study registration: It was registered with the legal office of the Central Denmark Region (file no. 1-16-02-286-21).

Keywords: critical illness; intensive care unit; post‐intensive care syndrome; post‐intensive care syndrome‐family; rehabilitation.