What is an ICU diary?

Patients who have been sedated and mechanically ventilated often need to reflect retrospectively on their experience of critical illness (Griffiths & Jones, 2007). In recent years it has become increasingly clear that many patients suffer from nightmares and stress related to their time in the intensive care unit (ICU) (Jones et al., 2001). ICU survivors describe memories and dreams, which they are unable to comprehend, and which often lead to a reduction in their quality of life (Ulvik et al., 2008).

Patients have also described symptoms of post-traumatic stress disorder (PTSD) similar to those experienced by casualties of war, natural disasters and serious accidents (Kvale et al., 2003). Symptoms of PTSD include otherwise unexplained and recurrent panic attacks, depression, fear, sadness, pain, or mental/ physical flashbacks in which unreal memories are re-experienced (Pattison, 2005; Jones C, Backman C, Capuzzo M, Flaatten H, Rylander C, Griffiths RD, 2007, Schelling, 2008). It has been demonstrated that as many as half of the relatives of surviving intensive care patients also express symptoms of PTSD (Jones et al., 2004).

In the UK, Scandinavia, and other European countries, patient diaries are being explored as a low cost technology to improve the quality of life after critical illness and mechanical ventilation (Combe, 2005; Egerod et al., 2007). Entries into the intensive care diary are made by nurses and in some countries also by relatives during the patient's stay. In other countries relatives are encouraged to write separate diaries (Gjengedal et al.,2010). The diary is written in everyday language and contains daily entries on the current patient status and descriptions of situations and surroundings in which the patient might find recognition. The text is often supported by photos. It is written directly to the patient, using an empathetic and reflective style and therapeutic communication (Roulin et al., 2007). 

The practice of writing a diary for intensive care patients was first noted in Denmark in the 1980s and was soon followed up in Sweden and Norway (Bergbom et al., 1999; Storli et al.,2003; Egerod et al., 2007). In the 1990s, intensive care patient diaries were reported in the UK (Combe, 2005; Robson, 2008), and have since emerged in Switzerland, Germany, Italy and Portugal (Jones et al., 2006; Roulin et al., 2007).

Qualitative studies show that patients and relatives generally welcome the diary (Storli & Lind 2009; Combe, 2005). The diary enables patients to evaluate their recovery and improves communication with their families about their experiences, thus sustaining family centred care (Roulin et al., 2007; Bergbom, 2008). By reading the diary, patients are able to understand their perceptions of their dreams and to connect these to diary entries and photographs during their period of critical illness (Backman & Walther, 2001; Robson, 2008). Patients may even be able to distinguish between reality and imagination, and determine whether some memories are misinterpretations of what actually happened. This may lead to a better understanding of their fears and the changes they have gone through. Diaries enable patients to make sense of their intensive care experiences, which they previously failed to understand (Storli et al., 2007; Storli & Lind, 2009). The diary is proved to reduce the incidence of depression, anxiety (Knowles & Tarrier 2010) and PTSD  for patients (Jones et al. 2010) and relatives (Jones et al 2012).

Based on: Nydahl P, Knück D, Egerod I (2010): The extend and application of patient diaries in German Intensive Care Units. Connect – The World of Critical Care Nursing 7 (2): 122-126