Patients’ experiences of intensive care diaries—A focus group study

SummaryThe aim of the study was to explore patients’ experiences and perceptions of receiving intensive care diaries. A focus group and intensive care diaries for four former ICU patients were analysed to understand what works and what needs further development for patients who receive a diary. The study had a triangulated approach and group dynamics were described as the focus group was used to explore agreement and disagreement among the participants. Little is known about the content of intensive care diaries and their usefulness and meaning for the patients. The participants in our study agreed that the diary alone provided incomplete information and reading the diary did not necessarily bring back memories, but helped complete their story. The patients needed to know what they had gone through in ICU and wished to share their story with their family. We conclude that diaries might help post-ICU patients to gradually construct or reconstruct their own illness narrative, which is pieced together by their fragmented memory, the diary, the pictures, the hospital chart and the accounts from family and friends.