Navigating the Intensive Care Unit-to-Home Trajectory: A Qualitative Study of Relatives' Experiences of Life During and After Critical Illness.
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.
The aim of this study was to explore relatives' experiences of being a relative throughout the pathway from the ICU to home.
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.
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.
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.
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.
It was registered with the legal office of the Central Denmark Region (file no. 1-16-02-286-21).
The aim of this study was to explore relatives' experiences of being a relative throughout the pathway from the ICU to home.
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.
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.
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.
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.
It was registered with the legal office of the Central Denmark Region (file no. 1-16-02-286-21).
Authors
Alrø Alrø, Møller Møller, Svenningsen Svenningsen, Jensen Jensen, Nedergaard Nedergaard, Dreyer Dreyer
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