“I have no memories for myself. I didn’t even realize I had been in a hospital. My family has been telling me. That time, for me it has not existed. “
This is the testimony of Josefa Garcia, after being discharged from an Intensive Care Unit (ICU), as it is collected in an article recently published in the ABC journal that tries to explain what the Post-ICU Syndrome is.
Patients admitted to ICU, especially those who need to be connected to a respirator and under sedation effects because of their severity , often forget how they have ended up in the ICU, or what has happened during the admission. Sometimes they may have distorted or even delirious memories regarding the period of stay in our units. Rebuilding a puzzle in which the pieces have been cluttered may seem like a complicated task, but when those pieces have been lost it becomes an impossible mission. The lack of information or the presence of altered memories provokes anxiety, fear and inability to understand, and therefore to be able to accept and overcome the difficulties. All of this constitutes one of the cornerstones for the onset of post-traumatic stress syndrome.
To prevent and fight against this syndrome and to promote, as far as possible, the recovery of the pre-admission situation in the ICU, different initiatives are being carried out around the world and, among them, today we want to highlight the “ICU Diaries “.
These diaries are a summary of the most relevant events taking place during the admittance. They are written jointly by family members, when they want, and the staff responsible for the care of the patient.
To create an ICU diary, we will include all relevant information that takes place during the admission and that the patient who has been admitted to the ICU needs to know or remember:
- Admission: How and why the patient enter the ICU, in what situation, what devices have been put and why, how the family and loved ones lived this moment
- How was the day-to-day in the unit? How has evolution been? What problems have occurred during the ICU stay?
- Achievements during the admittance: Disconnections of the respirator, mobilization, withdrawal of support devices.
- How the patient’s environment has lived the ICU stay.
- Pictures of the most important moments, devices, etc.
- Who has been responsible for taking care of the patient during the admission and who has collaborated in the elaboration of the diary.
The benefit of this activity is that reading what happened during the time that the patient has been more severe and sedated, the patient can fill that lack of information and replace those confusing and often false memories, favoring patient’s psychological rehabilitation after ICU discharge , reflected in a Cochrane literature review by Ullman and collaborators, “Diaries for recovery from critical illness”, published in 2014.
In Hospital de Fuenlabrada, within InnovaHUCI project, we are launching two modalities of these diaries. One of them is part of the app “FamiliaresHUCI” and another version, more traditional, which consists in the elaboration of booklets handwritten, with the “Fist and letter” of anyone who wants to participate.
We create these journals convinced that they can be a useful tool to advance in the long process of recovery after a serious illness, wanting to transmit to our patients that they are not alone, to continue fighting, because their effort certainly is worth; and because like drugs, caresses and walks, the diaries also heal.
#Diariosquecuran (healingdiaries)..According to the protagonists themselves:
“I was very pleased that they made me an Icu journal too. It helps fill in time frames, and some mixed up memories, even if it is emotional reading. And I was grateful for the 6 month Icu follow up appointment too.”
“We kept a running journal when our daughter was in the hospital. It was very helpful to us as caregivers. When reading through it afterward, daughter couldn’t believe all she had been through. Also, thanks to @iwashyna for giving us the first journal we used!”
“It has such a big impact, my icu hadn’t started this yet but my parents did it and every patient I have spoken to who has used theirs has found it to be truly useful and my understanding is it helps reduce mental health issues. It is so simple but has huge impact and benefits”
This work was done with the initial idea from @AneurinBevanUHB critical care & diary team- thanks to the critical care survivors who took part & RCBC Wales grant for enabling the time @RCBCWales @UniSouthWales @chezp67_cheryl from a poster submission #time to share