Exploring Patients’ Perceptions on ICU Diaries: A Systematic Review and Qualitative Data Synthesis

Abstract

OBJECTIVES: This study aims to summarize the current qualitative evidence on patients’ experiences of reading the ICU diaries. DATA SOURCES: We searched the online databases PubMed, Ovid, EMBASE, and EBSCO host from inception to July 2020. STUDY SELECTION: All studies that presented any qualitative findings regarding patients’ experiences of reading an ICU diary were included. DATA EXTRACTION: Study design, location, publication year, data collection method, and mode, all qualitative themes identified and reported, and participant quotations, when appropriate. We also extracted data regarding the diary structure, when available. A thematic synthesis approach was used to analyze and synthesize qualitative data. DATA SYNTHESIS: Seventeen studies were analyzed. Most patients reported positive experiences with the ICU diary, such as understanding what they survived during critical illness, better understanding the process of recovery, gaining coherence of nightmares and delusional memories, realizing the importance of the presence of family and loved ones during ICU stay, and humanizing healthcare professionals that helped them survive critical illness. Patients also reported which components of the diary were important for their recovery, such as the presence of photographs and reading the diary with a healthcare professional, allowing the improvement of the concept of the ICU diary. Conclusion: This qualitative synthesis shows that patients recommend having an ICU diary, enlightening benefits such as better coping with the slow recovery from critical illness, strengthening family ties, and humanizing the ICU staff. It also identifies characteristics of the diary valued by the patients, in order to standardize the ICU diary according to their perspectives, and allowing future comparability between randomized controlled trials.

Using Qualitative Synthesis to Explore Heterogeneity of Randomized Trials on ICU Diaries*

“…It seems clear from the literature that the ICU diary is a valuable tool for the recovery of critical illness and is deeply appreciated by both patients and family members (12, 13). As long as it was understandable and there were no, or very few, days missing, patients believed that the diary helped them understand the critical illness and better accept the process of recovery (12). It also changed their perception of the healthcare professionals and allowed them to see all the love and care received from their loved ones (12).…”

“…As long as it was understandable and there were no, or very few, days missing, patients believed that the diary helped them understand the critical illness and better accept the process of recovery (12). It also changed their perception of the healthcare professionals and allowed them to see all the love and care received from their loved ones (12). Family members also valued the ICU diary because it gave them the feeling of being involved with the patient’s care and increased the sense of togetherness (13).…”

“…For the qualitative analysis, we aimed to identify which components of the ICU diaries were important for recovery from critical illness from the patients’ point of view. We, therefore, used data from two systematic reviews with qualitative synthesis (thematic analysis) published in 2021 (12, 13). We chose these two reviews because one summarized findings concerning patients’ perspectives on the ICU diary components that helped them recover from critical illness (12), and the other provided healthcare professionals’ perspectives on initiating a diary (considering which group of patients would benefit the most from the intervention) (13).…”

“…We, therefore, used data from two systematic reviews with qualitative synthesis (thematic analysis) published in 2021 (12, 13). We chose these two reviews because one summarized findings concerning patients’ perspectives on the ICU diary components that helped them recover from critical illness (12), and the other provided healthcare professionals’ perspectives on initiating a diary (considering which group of patients would benefit the most from the intervention) (13). The quality of the studies included in both reviews was assessed with the Critical Appraisal Skills Programme tool.…”

“…In a recent qualitative synthesis, patients identified components of the ICU diary that they perceived as important for recovery (12). The aim of this analysis is to identify which set of components contributed to the diary’s effectiveness in RCTs, improving our understanding of this complex intervention.…”