Creating a shared narrative: A qualitative study on the impact of nurse-written ICU diaries for TBI-survivors and their family caregivers

Neuropsychol Rehabil. 2026 Jun 4:1-21. doi: 10.1080/09602011.2026.2684576. Online ahead of print.

Abstract

Diaries written for patients in the intensive care unit (ICU) are widely used to promote psychological recovery. By providing a structured account, diaries may help patients reconstruct their experiences and make sense of a period marked by memory loss or confusion. Many traumatic brain injury (TBI) survivors experience impaired memory, influencing both themselves and their family caregivers (FCs). The aim of this study was to gain a deeper understanding of the impact of a nurse-written ICU diary on TBI-survivors and their FCs. Nine TBI-survivors and ten FCs were interviewed as dyads in this exploratory qualitative study. Data were analyzed inductively using the interpretive description methodology. The overarching theme "Creating a shared narrative," encompassed four themes: "Piecing the parts together," describing strategies to gather information, "Negotiating the severity of the trauma," reflecting how the diary supported mutual understanding of illness severity, "Navigating an emotional terrain," capturing the emotional complexity involved, and "Humanizing the ICU experience," highlighting how the diary acknowledged the patient as a person. For TBI-survivors, the diary helped fill memory gaps and supported understanding of illness severity. For FCs, it facilitated communication and alignment of recovery expectations. Despite emotional complexity, receiving a diary was overall a positive experience.

Keywords: Traumatic brain injury; caregivers; diary; intensive-care unit; qualitative research.