ICU Survivors Experience of ICU Diaries: An Ancillary Qualitative Analysis of the ICU Diary Study

Cécile Flahault; Mathilde Trosdorf; Marie Sonrier; Christel Vioulac; Léonor Fasse; Jean-François Timsit; Sébastien Bailly; Maité Garrouste-Orgeas

doi:10.1097/CCE.0000000000000384

ICU Survivors Experience of ICU Diaries: An Ancillary Qualitative Analysis of the ICU Diary Study

Crit Care Explor. 2021 May 14;3(5):e0384. doi: 10.1097/CCE.0000000000000384. eCollection 2021 May.

Authors

Cécile Flahault¹, Mathilde Trosdorf¹, Marie Sonrier¹, Christel Vioulac¹, Léonor Fasse¹, Jean-François Timsit^{2

3

4}, Sébastien Bailly^{2

5}, Maité Garrouste-Orgeas^{2

6

7}

Affiliations

¹ LPPS-EA4057, Laboratory of Psychopathology and Health Process, Paris Descartes University, Paris, France.
² Infection, Antimicrobials, Modelling, Evolution (IAME), UMR 1137, INSERM and Paris Diderot University, Department of Biostatistics-HUPNVS-AP-HP, UFR de Médecine-Bichat University Hospital, Paris, France.
³ Department of Biostatistics, Outcomerea, Paris, France.
⁴ Medical ICU, Bichat University Hospital, Paris, France.
⁵ Grenoble Alpes University, INSERM, University Hospital Grenoble Alpes, HP2, Grenoble, France.
⁶ Medical Unit, French British Hospital, Levallois-Perret, France.
⁷ Palliative Care Unit, Fondation Diaconesses Reuilly, Rueil-Malmaison, France.

Abstract

Objectives: To investigate patients' experience of ICU diaries 6 months after ICU discharge among survivors. This study was designed to add insight into a large randomized study, which found no benefit of the ICU diary to post-traumatic stress disorder among critically ill patients having received mechanical ventilation.

Design: A preplanned qualitative substudy of patients receiving an ICU diary written by ICU caregivers and families. Six months after ICU discharge, survivors were contacted by a psychologist for a telephone interview using a semi-directive guide.

Setting: Thirty-five French ICUs.

Patients: All ICU survivors having received an ICU diary.

Intervention: An ICU diary written by both ICU staff and families.

Measurements and main results: Among the 332 patients randomized in the intervention group (having had an ICU diary filled by both ICU staff and families), 191 (57.7%) were alive at 6 months and 101 of 191 (52.9%) participated in a telephone interview. They were (median [interquartile range]) 64 years old (53-70 yr old); 65 (64.4%) were men, and 79 (78.2%) were medical patients. Duration of ICU stay was 13 days (8-21 d). Three themes were derived from the thematic analysis: 1) reading the diary: between emotion and pain, 2) how the diary helped, and 3) the bittersweet representation of the diary. For half of the patients, the diary is a good memory of difficult times (55/101, 54.5%), others seem to be more ambivalent about it (28/101, 27.8%), and 37 of 101, 36.6% see it as a painful representation of a time to be forgotten.

Conclusions: When reading their ICU diaries, ICU survivors experienced mixed emotions, related to family messages, medical caregiving, and to the severity of their illness. Patients described diaries as a help or a hindrance to recovery, depending on their wish to remember the period or move on from it.

Keywords: intensive care; intensive care unit diary; post-traumatic stress disorder; psychological interview; qualitative research.