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The write stuff

The use of ICU diaries as a tool to assist patients’ recovery and reduce their chances of developing post-traumatic stress disorder is gradually increasing throughout Australian hospitals. 

Researchers around the world are homing in on the psychological impacts faced by ICU survivors.

During and post physical recovery they are presenting with emotional and mental health issues including depression, anxiety and post-traumatic stress disorder (PTSD).

“Physical weakness usually gets better, but these mental symptoms often just linger,” said Joseph Bienvenu, associate professor of psychiatry and behavioural sciences at Johns Hopkins University.

New research from the university suggests that more attention needs to be placed on preventing and treating PTSD in ICU patients.

According to Bienvenu, delirium – often associated with PTSD – can lead to memories of horrible experiences that didn’t actually happen. He said it is common for ICU patients to experience flashbacks of delusions or hallucinations they had in the hospital.

ICU diaries have long been considered a useful tool to help patients understand these phenomena, and assist in the transition from critical illness back into their normal lives.

The practice of keeping a diary, which originated in Sweden, has been growing here in Australia over the past decade.

The diary logs events, changes and progress throughout a patient’s experience in ICU and is includes notes by nursing and medical staff as well as relatives during sedation and mechanical ventilation.

Paul Fulbrook, national president of the Australian College of Critical Care Nurses, said that while there are no figures that reveal exactly how many hospitals throughout Australia use ICU diaries, it is an emerging practice – one that is now being backed up with research evidence.

“There are quite a few reports out now of people using the diaries successfully, and certainly they are used in the ICU at my hospital [the Prince Charles Hospital, Queensland],” he said.

“Research has shown us that when the patients later get the opportunity to read their diaries, it helps to explain to them the things they thought they experienced in a manner that is a lot clearer.

“It’s similar to a conversation that you might have had with the person, should they have been able to take part.”

European researchers recently undertook a study into the effectiveness of the ICU diary in reducing PTSD. According to Bienvenu, “the intervention reduced PTSD symptoms by helping patients make sense of their ICU experience”.

Bev Ewens of Edith Cowan University (ECU), has completed research into the support the ICU diary offers patients who are trying to deal with immense physical and psychological stress.

“It has been recognised that patients with delusional memories [which are often persecutory in nature] and lack of recall of their ICU experience are at higher risk of psychological morbidity, which also correlates with some studies that have linked high doses of benzodiazepines with psychological complications – potentially because of their amnesic effects,” she said.

“It has been postulated that the causative factors for psychological distress are triggered by perceived threat to life, uncontrollable and unpredictable nature of events and by being outside of the usual human experience.”

Results from a small study conducted by ECU revealed that feedback from patients was positive and that the diaries enabled them it understand what had happened, the severity of their illness and why it has taken them so long to recover.

“[Patients] viewed the diaries as maintaining a human connection between themselves and their loved ones, and viewed the nurses’ entries as above and beyond their normal duties,” she said.

“We should not underestimate the power of diaries as a psychological tool, and that in some patients there may be detrimental effects. We still need to explore this in depth,” said Ewens.

“It’s important to consider the role of diaries as a follow-up tool. Patients need facilitation to work through the diaries and this should be part of the process.”

Lisa Self, clinical nurse manager at Joondalup Health Campus (JHC) in northern Perth, said the diary makes a “massive impact” on patients’ recovery and outcomes, and that the workload is minimal – generally a five-minute entry.

She said that day-to-day entries involve “light writing”, including medical information in basic, easy-to-understand terms, details about visitors, and events in the world outside of the hospital.

She said the first entry takes a little more time because it details what brought the patient to the ICU.

“Ninety per cent of the staff write in the diary and we encourage the medical staff to do so as well,” Self said. “Some of the staff are junior, so they don’t feel they have the knowledge to be able to write in the diary. Others just feel uncomfortable about it – they don’t really know what to say and that’s fine. We provide the education as to why it is beneficial … but we are not going to force people to do it.”

Case study: Richard May

Richard May was admitted to the ICU unit of Joondalup Health Campus on April 20, 2011, suffering from pancreatitis. Richard spent a total of six weeks in ICU, where he was put into an induced coma to let his body begin to heal.

Not released until the end of May, Richard was at varying levels of consciousness, and only has recollection of approximately the last 10 days of his stay in the ICU ward.

His illness, which is a condition often linked to alcoholism, left Richard feeling as though people were judging him as an alcoholic – which isn’t the case.

He believes that these negative feelings stayed with him throughout the coma and surfaced in bad dreams and paranoia.

He says that it wasn’t until being given his diary that he began to understand his feelings and thoughts about his experience in the ICU.

“When you get the diary and you read about how the people – nurses, medical staff and your family and friends – cared for you, you begin to understand the position you have been in,” he said.

“I think it would have been an extremely frightening experience trying to piece together what happened without the diary.”

He explained that having the diary to reflect on his circumstances “humanised” the experience, allowing for the nurses to relay not only what was going on medically, but also what was happening in the world at the time.

The diary illustrated to Richard how much people really cared – especially family, who also made diary entries throughout his ordeal.

“You know your wife, parents and family love you – but it’s not until you see what people have gone through with you that you really understand,” Richard says.

“And as much as your family would tell you things, having something to look at really helped with the recovery process. It really was a massive part of my rehabilitation.”

Richard also had two sessions of counselling to help with his recovery, and today is a strong advocate for the use of the diary within hospitals.

He has been back to JHC since, to deliver a talk to nurses on how the diary helped in his recovery.

In fact, the diary holds such significant value to Richard, he carries it with him in his laptop bag every day.

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