A patient diary is an informal record of a patient’s stay in an intensive care unit (ICU), while they are sedated and ventilated. It takes the form of a narrative and contains contributions from nurses, doctors, therapists, chaplains and family members.
The purpose of the diary is to help the patient bridge the memory gaps that can occur while in the ICU, and thus help them in their psychological recovery once discharged.1
ICU patient diaries were first introduced in the 1980s in Denmark, and, during the 1990s, were gradually introduced to other European cities and the United States. Today, countries where ICUs use patient diaries also include New Zealand, Australia and Indonesia.
In the ICU, patient control is low – the person’s basic physical functions are removed from them through sedation and, occasionally, paralysis. This can lead to psychological challenges for intensive care survivors.2 ICUs are noisy too; machine alarms often ring out and staff move in and out of rooms and around the patient’s bed-space. This noise and constant disruption can also contribute to significant sleep and mood disturbances. Patients who have a prolonged ICU admission (defined as being equal to or longer than 10 days)3 will often have altered memories of what happened during their time in intensive care and can suffer from flashbacks in which unreal memories are re-experienced. Sedative medications, as well as the disease process, can also, and often do, result in confusion and delirium, which contribute to a poor psychological recovery.
Research shows that more than 80 per cent of ICU patients can suffer from delirium during their hospital stay and that 25 percent of all ICU patients will suffer from post-traumatic stress disorder (PTSD) once they leave hospital.4 Patients with ICU delirium are less likely to survive, and those that do are more likely to suffer long-term cognitive damage.
Delirium is a state of severe confusion – sufferers are unable to think clearly and have trouble paying attention and understanding what is going on around them. They may also hallucinate – seeing and hearing things that are not there but which seem very real to them. This can lead to patients feeling frightened, angry and ashamed.5
Research shows ICU patient diaries can be effective at filling in memory gaps, as well as helping patients reclaim ownership of lost time.6
The use of diaries has also been proved to reduce the incidence of depression, anxiety and other PTSD symptoms.
Patient diaries have also been shown to improve patients’ psychological health after recovery from their critical illness.7, 8 The use of diaries is an evidence-based practice that improves the quality of life of patients in an ICU,9 and has also been proved to reduce the incidence of depression, anxiety and other PTSD symptoms.10
The number of patients admitted to ICUs and requiring mechanical ventilation worldwide has increased exponentially over the past year as a result of the spread of COVID-19, and patients admitted with COVID-19 are averaging a length of stay in the ICU of 10.4 days.11 With that length of admission, and given the stressful ICU environment, psychological challenges are to be expected for these COVID-19 survivors.2
These patients fit the criteria of a prolonged ICU admission, and as diaries have been shown to improve patients’ psychological health after recovery from their critical illness,7 use of a patient diary to fill the loss of time and place for these patients will be essential in their recovery.
The ICU diary is useful as a medium for patients to process emotions, gain insights, reduce stress and track information.12 Patients have commented in research that the diaries have also helped them connect with their families, whether through confirming the information presented in the diary, or as a way for the patient to comprehend and come to terms with what the family has been through during the patient’s ICU admission.13 For this reason, it is especially helpful if there are contributions from the family in the diary.
Critically unwell patients who have received a diary post-recovery have most appreciated that the diary is personally written – this has made them feel “confirmed and valuable as a person”.14 Another researcher commented that a diary with contributions from nurses, doctors, physiotherapists and chaplains is likely to hold more meaning than a diary filled in by one person alone.8
Research into patient diaries shows they are beneficial to the recovering patient. However the process is a delicate one and the introduction of diaries to ICUs must be supported with policies, committed staff and a strong follow-up and/or support network. Diaries can be painful and distressing for the patient to read as they reawaken traumatic memories.6 So it is recommended they should form one aspect of a rehabilitation programme, such as a follow-up clinic or an ICU Steps programme in a controlled, well-managed and safe environment.
Documentation needs to be accurate and complete; it works wonders at telling a patient’s story and can even improve patient care.15
Diaries that are given to the patient but are incomplete or have big gaps between entries have been shown to be more harmful than helpful6 and therefore it is important to have a committed team behind them.
ICU diaries are very popular in more established ICU departments in wealthier western countries and this is evident on the map on the patient diary website. There is no real evidence to prove why this is. However one research study comments that diaries are a relatively new concept in low to middle-income countries, likely as a result of literacy and socio-cultural inhibitions affecting their introduction.16
My own experience with patient diaries has been very positive. It was really encouraged on my previous ICU unit in the United Kingdom, with great support in place to follow-up with staff to encourage them to write entries.
One experience I can speak of with fondness: I was informed by one of our clinical nurse specialists (CNS), who ran the follow-up clinics with the former ICU patients where they receive their diaries, that a patient read my diary entry and remembered our interaction from that time. The CNS said the patient had been struggling with memory loss during her time in ICU (which is not uncommon) and that while reading the diary entries at the meeting she was triggered by something I had written about a conversation I had with her. Apparently she became emotional at the memory and having the CNS there to support her in a controlled environment was extremely beneficial to her progress.
The evidence is there to show that patient diaries are beneficial to a patient’s recovery following their ICU experience, as long as the diaries are written in a respectful and safe manner and the patients receive the diaries while having some psychological support from experienced staff.
Joanne Lomax, RN, BSc hons (adult nursing), has worked in intensive care units in the United Kingdom and in Auckland, and is now a staff nurse in the special care baby unit at Waitakere Hospital, Auckland.
- Nydahl, P. (2021). ICU-diary.
- Tingey, J. L., Bentley, J. A., & Hosey, M. M. (2020). COVID-19: Understanding and mitigating trauma in ICU survivors. Psychological Trauma: Theory, Research, Practice, and Policy, 12(S1), S100–S104. doi.org/10.1037/tra0000884
- Chan, C-L., Ting, H-W., & Huang, H-T. (2014) The Definition of a Prolonged Intensive Care Unit Stay for Spontaneous Intracerebral Hemorrhage Patients: An Application with National Health Insurance Research Database. BioMed Research International. doi.org/10.1155/2014/891725
- McFarling, U. L. (2016). Hospitals struggle to address terrifying and long-lasting ‘ICU delirium’.
- Vanderbilt University Medical Center. (2021). Patients and families overview. [Accessed 3 March 2021].
- Teece, A., & Baker, J. (2017). Thematic Analysis: How do patient diaries affect survivors’ psychological recovery? Intensive and Critical Care Nursing, 41, 50-56.
- Aitken, L. M., Rattray, J., Kenardy, J., Hull, A. M., Ullman, A. J., Le Brocque, R., & Macfarlane, B. (2017). Perspectives of patients and family members regarding psychological support using intensive care diaries: an exploratory mixed methods study. Journal of Critical Care, 38, 263-268.
- Jones, C., Bäckman, C., Capuzzo, M., Egerod, I., Flaatten, H., Granja, C., Rylander, C., Griffiths, R. D; RACHEL group. (2010). Intensive care diaries reduce new onset post traumatic stress disorder following critical illness: a randomised, controlled trial. Critical Care, 14(5).
- Rogan, J., Zielke, M., Drumright, K., & Boehm, L. M. (2020). Institutional Challenges and Solutions to Evidence-Based, Patient-Centered Practice: Implementing ICU Diaries. Critical Care Nurse, 40(5), 47-56.
- Heindl, P., Bachlechner, A., Nydahl, P., & Egerod, I. (2019). Extent and application of patient diaries in Austria: process of continuing adaptation. Nursing in critical care, 24(6), 343-348.
- Ferguson, N. M., Laydon, D., Nedjati-Gilani, G., Imai, N., Ainslie, N., Baguelin, M., Bhatia, S., Boonyasiri, A., Cucunuba, Z., Cuomo- Dannenburg, G., Dighe, A., Dorigatti, I., Fu, H., Gaythorpe, K., Green, W., Hamlet, A., Hinsley, W., Okell, L. C., van Elsland, S., Thompson, H., Verity, R., Volz, E., Wang, H., Wang, Y., Walker, P. G. T., Walters, C., Winskill, P., Whittaker, C., Donnelly, C. A., Riley, S., & Ghani, A. C. (2020). Report 9: Impact of non-pharmaceutical interventions (NPIs) to reduce COVID-19 mortality and healthcare demand (PDF, 721 KB).
- Mickelson, R. S., Piras, S. E., Brown, L., Carlile, C., Drumright, K. S., & Boehm, L. (2021). The use and usefulness of ICU diaries to support family members of critically ill patients. Journal of Critical Care, 61, 168-176
- Barreto, B. B., Luz, M., Rios, M. N., Lopes, A. A., & Gusmao-Flores, D. (2019). The impact of intensive care unit diaries on patients’ and relatives’ outcomes: a systematic review and meta-analysis. Critical Care 23, 411. doi.org/10.1186/s13054-019-2678-0
- Strandberg, S., Vesterlund, L., & Engstrom, A. (2018). The contents of a patient diary and its significance for persons cared for in an ICU: A qualitative study. Intensive & Critical Care Nursing, 45, 31-36.
- Schaeffer, J. (2016). Poor Documentation: Why It Happens and How to Fix It. For the Record, 28(5), 12.
- Tripathy, S., Acharya, S. P., Sahoo, A. K., Mitra, J. K., Goel, K., Ahmad, S. R., & Hansdah, U. (2020). Intensive care unit (ICU) diaries and the experiences of patients’ families: a grounded theory approach in a lower middle-income country (LMIC). Journal of Patient Reported Outcomes, 63.
This article was reviewed by Steve Kirby, RN, MN, BA hons, a clinical resource nurse in critical care at Middlemore Hospital, South Auckland, and vice-chairperson of the NZ College of Critical Care Nurses.