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The SILENCE project, funded by the NIHR Research for Patient Benefit stream, featured on BBC Radio 4 Inside Health on 4 October 2016.

Intensive care 1 Chaikom/Shutterstock

Sleep

It was always noisy in the unit. I really struggled to sleep at all. I think I only got about two hours a night, and it was fitful. When I moved into a two-bed ward afterwards it was much better.
- Peter Edmonds (patient representative for the SILENCE team)

As part of the SILENCE project the University of Oxford research team have monitored patient sleep while in the intensive care unit (ICU). This work is ongoing but their interim findings indicate that on average patients sleep for just two or three minutes at a time and have less than two hours of sleep in total.

'This is not restful sleep', said Julie Darbyshire (lead researcher). 'Normal healthy sleep should include around 20% of REM sleep and around 20% of deep sleep. What we see in patients is much lower, between three and seven percent.'

The research team have worked closely with staff and patients to make some simple changes to the unit. These include plastic lidded bins, posters, and alarm management guidelines to encourage personalised monitoring and encourage a better day/night routine.

The team has also developed a new training course that includes a short session where staff can experience what it can be like for a patient in the ICU. Wearing glasses that simulate the poor vision common in many patients treated in the ICU, they hear a soundtrack of common sounds in the unit while people move around the bed, as staff would do during routine nursing activities. Professor Duncan Young (clinical lead for the research group) said: ‘The experience helps staff understand things from the patient’s point of view, and most of those who have been through the training have said that they will change the way they work.The next stage is to develop a noise display, so staff can see and better manage the noise level in the unit. Taken together, we hope all these activities will make intensive care a better environment for patients.’

Delirium

ICU staff are aware that patients may suffer delusions during their stay, but this paper offers a unique insight into what this is really like. It brings their experiences to life and demonstrates the power of qualitative research. The exploration of recurring themes in patients' delusions will assist ICU staff in their management of confused and hallucinating patients, as well as their general day-to-day practice.
- Sarah Vollam, Researcher and Intensive Care Nurse

The Inside Health team also talked to Julie and Mark Borthwick (ICU Pharmacist) about the patient experience of intensive care, specifically the problem of delirium. This interview was broadcast on 18 October.

Delirium in the intensive care unit is very common, with up to 75% of patients suffering at least once during their stay. It is also widely recognised that much of this delirium is undiagnosed, particularly in those patients who suffer from hypo-active forms of the condition who may not draw attention to themselves.

Julie and the team discovered that while there are high levels of interest in academic literature describing the incidence, suspected causes of, and discussion of the benefits and side-effects of various treatments for delirium in the ICU, peer-reviewed patient-focused research is almost non-existent. Real understanding of what patients are thinking during their delusionary state is therefore limited.

Interview transcripts, collected for an earlier study by the University of Oxford Health Experiences Research Group, were made available to the group and these were reviewed with a specific focus on sleep and delirium. The paper, 'I Can Remember Sort of Vivid People…but to Me They Were Plasticine.' Delusions on the Intensive Care Unit: What Do Patients Think Is Going On?, Julie L. Darbyshire, Paul R. Greig, Sarah Vollam, J. Duncan Young, Lisa Hinton, was published in PLOS One earlier this year. The team found that there were striking similarities in the individual patient experiences, and that much of the fear felt by patients may be due to a combination of a lack of personal control and unfamiliarity of the ICU environment.

The Inside Health feature also included an interview with mother and daughter, Fiona and Catherine who gave a very honest personal account of their experience when Fiona was admitted to intensive care.

Feedback to the research team since the episode was broadcast has been high. Several people have contacted the group to offer their own, similar, experiences of intensive care, or to welcome the publicity that ICU delirium has had as a result of the programme. Many patients, both in the original interview transcripts and in communications in response to the broadcast often felt that they were suffering alone, and that no-one believed them. The research team feel there is a real importance, and practical need, to share these experiences and to raise awareness of this little publicised but very common experience.

Both Inside Health episodes are available for download from the BBC iPlayer website. 

Many extracts from the original patient interviews are publicly available, with summarised findings, on the DIPEx Charity website.