The photo-diary and follow-up appointment on the ICU: Giving back the time to patients and relatives. : A descriptive and interventional study

Sammanfattning: Background: Patients on the ICU often spend a great deal of their time either unconscious or heavily sedated. When they return from the zone between life and death they are often in a state of confusion where dreams and delusions are intertwined with reality and it is not always easy to distinguish them apart. These experiences could lead to psychological problems and post-traumatic stress disorder (PTSD). Recovery may be improved by filling in the significant memory gaps and explaining what really happened during the “chaotic” time on the ICU. The provision of a diary describing the patients’ stay in ICU on a day to day basis and a follow-up meeting (together named the ICU-diary concept), may help the whole family to understand.Aim: The principal aim of this thesis was to see if the ICU-diary concept was of help to patients and relatives in the recovery after critical illness. A further aim was to look for precipitants in the ICU of PTSD.Material and Methods: ICU patients in a handful of European countries and their relatives have been studied. The studies have been single and multi-centred and we have used descriptive observational, randomised controlled and cohort study designs, including matched case-control designs. Quantitative methods have been used with questionnaires and structured interviews using established instruments (i.e Post-traumatic stress syndrome screening-14, Post-traumatic diagnostic scale, ICU memory tool, Short Form-36, Pearlin-Schooler Mastery Scale, Hopelessness scale) as the principal means of data collection.Results: The ICU-diary concept was seen to be a positive and useful aid in helping patients and their relatives understand the events that took place during the time on the ICU. It also decreased the risk for PTSD among patients and relatives. Patients that were supported with the ICU-diary concept perceived a better health-related quality of life even 3 years after the ICU stay. We did not find any definite improvement by the ICU-diary concept in mastery and hope. Variations in how the patients were cared for in the ICU had a significant effect on the development of PTSD. The implementation of an ICU diary, for instance, was associated with a lower frequency of PTSD.Conclusions: The ICU-diary concept was found helpful by patients and their relatives. It was associated with a reduction in new onset PTSD and improved health-related quality of life. The results are encouraging and suggest that an ICU diary may represent an important first step to help patients and relatives come to terms with their experiences during critical illness.ISBN 978-