Surviving critical illness: Acute respiratory distress syndrome as experienced by patients and their caregivers

Cox, Christopher E.; Docherty, Sharron L.; Brandon, Debra H.; Whaley, Christie; Attix, Deborah K.; Clay, Alison S.; Dore, Daniel V.; Hough, Catherine L.; White, Douglas B.; Tulsky, James A.

doi:10.1097/ccm.0b013e3181b6f64a

Cited by 136Respiratory Support and MechanismsIntensive Care Unit Cognitive DisordersFamily and Patient Care in Intensive Care Units

Surviving critical illness: Acute respiratory distress syndrome as experienced by patients and their caregivers

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Cox, Christopher E., Docherty, Sharron L., Brandon, Debra H., Whaley, Christie, Attix, Deborah K., Clay, Alison S., Dore, Daniel V., Hough, Catherine L. +2 more·2009·Critical Care Medicine

DOI 10.1097/ccm.0b013e3181b6f64aPMC PMC2771584

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Abstract

OBJECTIVE: To characterize the effects of critical illness in the daily lives and functioning of acute respiratory distress syndrome survivors. Survivors of acute respiratory distress syndrome, a systemic critical illness, often report poor quality of life based on responses to standardized questionnaires. However, the experiences of acute respiratory distress syndrome survivors have not been reported. DESIGN: We conducted semistructured interviews with 23 acute respiratory distress syndrome survivors and 24 caregivers 3 to 9 mos after intensive care unit admission, stopping enrollment after thematic saturation was reached. Transcripts were analyzed, using Colaizzi's qualitative methodology, to identify significant ways in which survivors' critical illness experience impacted their lives. SETTING: Medical and surgical intensive care units of an academic medical center and a community hospital. PATIENTS: We recruited consecutively 31 acute respiratory distress syndrome survivors and their informal caregivers. Eight patients died before completing interviews. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Participants related five key elements of experience as survivors of acute respiratory distress syndrome: 1) pervasive memories of critical care; 2) day-to-day impact of new disability; 3) critical illness defining the sense of self; 4) relationship strain and change; and 5) ability to cope with disability. Survivors described remarkable disability that persisted for months. Caregivers' interviews revealed substantial strain from caregiving responsibilities as well as frequent symptom minimization by patients. CONCLUSIONS: The diverse and unique experiences of acute respiratory distress syndrome survivors reflect the global impact of severe critical illness. We have identified symptom domains important to acute respiratory distress syndrome patients who are not well represented in existing health outcomes measures. These insights may aid the development of targeted interventions to enhance recovery and return of function after acute respiratory distress syndrome.

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Patients admitted to an intensive care unit commonly experience psychological distress after discharge.
“Patients who are sick enough to be admitted to an intensive care unit (ICU) commonly experience symptoms of psychological distress after discharge”
From Effects of mindfulness training programmes delivered by a self-directed mobile app and by telephone compared with an education programme for survivors of critical illness: A pilot randomised clinical trial (2019) · cites this paper as [1]
The Results (The day to day impact of new disability) report depression, anxiety, fear, and emotional lability after discharge, and the Discussion describes patients’ psychological distress. However, the Methods (Study design) show that the study enrolled ARDS survivors who required mechanical ventilation, so its findings do not establish how commonly psychological distress occurs among all ICU patients. (LLM, conf=0.84)
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Quality of life among survivors of prolonged critical illness; a mixed methods study
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Authors: Cox, C. E., Docherty, S. L., Brandon, D. H., Whaley, C., Attix, D. K., Clay, A. S., Dore, D. V., Hough, C. L., White, D. B., & Tulsky, J. A.
Affiliations: Duke University (US)
University of Washington (US)
University of Pittsburgh (US)
ORCID: Cox, Christopher E.
Docherty, Sharron L.
Brandon, Debra H.
Attix, Deborah K.
Clay, Alison S.
Hough, Catherine L.
White, Douglas B.
Tulsky, James A.
Venue: Critical Care Medicine
Publisher: Ovid Technologies (Wolters Kluwer Health)
Published: 2009-10
Volume: 37
Issue: 10
Pages: 2702-2708
ISSN: 0090-3493 (ISSN-L)
DOI: 10.1097/ccm.0b013e3181b6f64a
PMC: PMC2771584
OpenAlex: W2080634338
Cited by: 136
References: 43
Citations by year: 2026: 3 · 2025: 6 · 2024: 7 · 2023: 5 · 2022: 14 · 2021: 11 · 2020: 9 · 2019: 11 · 2018: 12 · 2017: 7 · 2016: 11 · 2015: 9 · 2014: 6 · 2013: 8 · 2012: 8
FWCI: 4.77
Type: journal article
Language: en
Open access: green
www.ncbi.nlm.nih.gov
Locations: Critical Care Medicine (publishedVersion)
PubMed (publishedVersion)
PubMed Central (acceptedVersion)
Funders: National Heart, Lung, and Blood Institute (K23HL081048, K23HL074294)
National Center for Research Resources (KL2RR024130)
Topics: Health Sciences › Medicine › Pulmonary and Respiratory Medicine › Respiratory Support and Mechanisms
Health Sciences › Medicine › Critical Care and Intensive Care Medicine › Intensive Care Unit Cognitive Disorders
Health Sciences › Health Professions › Radiological and Ultrasound Technology › Family and Patient Care in Intensive Care Units
Keywords: acute respiratory distress syndrome, critical illness survivors, patient experience, caregiver experiences, disability, quality of life, coping, relationship strain, selfhood, intensive care unit survivors, post-intensive care recovery
MeSH terms: Activities of Daily Living, Adaptation, Psychological, Adult, Aged, Body Image, Critical Care, Culture, Disability Evaluation, Empathy, Female, Follow-Up Studies, Humans, Male, Middle Aged, Patient Care Team, Quality of Life, Mental Recall, Respiratory Distress Syndrome, Self Concept, Sick Role, Social Support, Stress Disorders, Post-Traumatic, Caregivers, Outcome Assessment, Health Care, Cost of Illness, Survivors

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Surviving critical illness: Acute respiratory distress syndrome as experienced by patients and their caregivers

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