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

Abstract

Objective-Survivors of the acute respiratory distress syndrome (ARDS), a systemic critical illness, often report poor quality of life based on responses to standardized questionnaires. However, the experiences of ARDS survivors have not been reported. Our objective was to characterize the effects of critical illness in the daily lives and functioning of ARDS survivors.Design, Setting, and Patients-We recruited consecutively 31 ARDS survivors and their informal caregivers from medical and surgical intensive care units of an academic medical center and a community hospital. Eight patients died before completing interviews. We conducted semistructured interviews with 23 ARDS survivors and 24 caregivers three to nine months after ICU 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.Measurements and Main Results-Participants related five key elements of experience as survivors of ARDS: pervasive memories of critical care, day to day impact of new disability, critical illness defining the sense of self, relationship strain and change, and 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 ARDS survivors reflect the global impact of severe critical illness. We have identified symptom domains important to ARDS patients that 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 ARDS. Corresponding author and reprints:

Resilience in Survivors of Critical Illness in the Context of the Survivors’ Experience and Recovery

“…Without longitudinal data between hospital discharge and the time of the interview, it is plausible that other events explain the impairments identified, and the rates of symptom remission and functional recovery require direct examination. Also, although our results are consistent with the existing literature (18,19,59), we acknowledge the potential for recall bias regarding our qualitative analyses. Specifically, the ordering of the interview, with objective assessments followed by open-ended questions, may have resulted in a framing bias in terms of responses elicited.…”

“…To augment existing support networks, peer support is another potentially valuable intervention (57,58) that could complement a redesign of multidisciplinary follow-up care that aims to better support survivors and their family and caregivers. Consistent with the qualitative experience of survivors of acute respiratory distress syndrome and sepsis (18,19,59), clinicians have a profound therapeutic impact on survivors during recovery in terms of their ability to reassure, educate, rehabilitate, prepare, and support survivors for life after critical illness. The ICU diary is one novel strategy to personalize this process and improve longterm neuropsychological health (60,61).…”

“…Related, as the qualitative experience of survivors of critical illness have focused on severe sepsis and acute respiratory distress syndrome (18,19), it is largely unknown what challenges survivors face during recovery and what factors facilitate recovery. This contextual knowledge is essential as we design health care to meet the needs of survivors by bolstering their resilience and mitigating the risk of PICS.…”

Chronic Critical Illness. Is This a New Term or an Old Problem?

“…Очень часто, даже если пациент выжил, функциональное состояние в большинстве случаев оставляет желать лучшего. Большая часть больных продолжают быть зависимыми от постороннего ухода [14].…”

Can We Optimize Long-Term Outcomes in Acute Respiratory Distress Syndrome by Targeting Normoxemia?

“…Cognitive impairment, an outcome of vital importance to ARDS survivors and their caregivers (37), is common after ARDS (11,13,15,16). Emerging evidence suggests that mechanical ventilation per se may trigger neuronal apoptosis via vagal and dopaminergic pathways (36).…”