The experience of being in hospital critical care has major impacts upon the patient, their family and carers. This situation is likely to be stressful, fast changing and challenging for those involved. Crucial to this encounter are factors relating to information sharing between the clinical team, the patient, family and carers. Focus groups at a UK hospital site with former patients, their families and carers provides insight into their journey and the factors that influence this. Issues that emerged included the format of information, how and who delivered this, communication transition out of critical care and leaving hospital. While participants expressed the need for personalised information, they also requested practical guidance at appropriate times in accessible formats. The encouragement from staff to keep diaries and record the patient’s journey was very valued and helped recall and share progress in difficult and challenging situations. Support and coordination of care when leaving critical care and the hospital also requires planning and communication with the patient, their family and carers and relevant health care teams. The experience of patients, their families and carers is important to understand in order to ensure future services can be tailored to meet their requirements.

Experience Framework

This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework)