Constructing the illness narrative: a grounded theory exploring patients' and relatives' use of intensive care diaries.

OBJECTIVE

After a stay in the intensive care unit, patients risk experiencing delusional memories, memory loss, and symptoms of posttraumatic stress. Since the 1990s, diaries have been kept for intensive care unit patients to help fill in memory gaps, aid psychosocial recovery, and improve health-related quality of life. More insight is needed into the application of diaries. The aim of our study was to explore how patients and relatives use diaries in the context of the illness trajectory.

DESIGN

Qualitative multicentered design using in-depth semistructured interview technique.

SETTING

A nine-bed general intensive care unit and a 13-bed thoracic surgical intensive care unit in Denmark.

PATIENTS

A sample of 19 patients at 6-12 months postintensive care unit discharge and 13 relatives (n = 32).

INTERVENTIONS

Intensive care diaries and handover 1 or 3 months postintensive care unit discharge.

MEASUREMENTS AND MAIN RESULTS

Grounded theory method was used to explore the use of diaries as a psychosocial process of recovery involving patients and relatives. Data were managed by NVivo software. The core category was "constructing the illness narrative," which was a process of narration embedded in our emerging theory of psychosocial recovery after critical illness. The main categories within the patient perspective were information acquisition and gaining insight, and the main categories within the relative perspective were supporting the patient, supporting oneself, and negotiating access.

CONCLUSIONS

Intensive care diaries are useful to patients as well as their relatives. Patients need to construct their illness narrative, and diaries are among the sources they use. The patients' project was to combine various sources of information in a process of information acquisition, narration, and evolving insight progressing toward recovery. The relatives supported the patients' project and also supported themselves by using the diary to uphold their own healing process. We recommend intensive care diaries as a low-technology, low-cost rehabilitative intervention for patients and relatives to help bridge the span from intensive care to recovery.