Diaries for Intensive Care Unit Survivors (DISCUSS): Perspectives of patients and family members regarding psychological support

Abstract

Diaries summarising care in the intensive care unit (ICU) are routine practice in some countries, although format and method of delivery vary. Evidence to support diary use is limited and uptake by patients and relatives is infrequent raising questions of acceptance and generalisability.

The purpose of this study was to identify whether distress post-ICU influences patients’ and relatives’ choice of receiving a diary and what format and method of diary delivery was preferred.

An exploratory mixed-methods study was undertaken in a Brisbane tertiary hospital with general ICU patients admitted for ≥3 days and their relatives. Semi-structured interviews were conducted 3–5 months after ICU discharge. Psychological distress was assessed using the Kessler-10 and Post-traumatic Stress Disorder Symptom Checklist–Civilian Version 5. Perceptions of benefit of an ICU diary were assessed using a four-point Likert scale. Differences were examined using Fisher's exact tests (p < 0.05).

Fifty-three patients and 22 relatives consented to participation with 22 patients and 19 relatives completing interviews prior to reaching data saturation. Patients were usually male (63%) and aged 53 ± 14 years. Psychological distress was evident in 25 (47%) patients and 5 (23%) relatives. The majority of patients (40, 75%) and relatives (17, 77%) considered a diary as beneficial. There were no statistically significant differences in the psychological health of participants who perceived diaries as beneficial and those who did not.

Participants raised similar issues regarding diaries, although with diverse opinions. Themes included: memory and recall; level of detail; communication within ICU, shared memory; variable timing; staff workload; impact on stress; uncertainty related to survival; and diary ownership.

Psychological distress was not related to patient and relative preferences of receiving an ICU diary. Although common themes related to diaries were expressed by participants, details were diverse. Future interventions to aid psychological recovery need to account for this diversity.