Learning from COVID-19 intensive care patient experiences

Spending time in intensive care can be life changing. ICU patients report a wide range of mental and physical effects that may shape their everyday life for years after leaving hospital.

We are only now starting to discover what long-term recovery looks like for COVID-19 patients who have been cared for in ICU. It is clear they can face a long and difficult rehabilitation journey. We hear facts and statistics about COVID-19 cases, ICU admissions and deaths every day, but what do we really know about individual experiences of the disease and treatment?

We want to understand how patients with COVID-19 experienced their stay in ICU, and how they make sense of what happened to them. We want to learn more about their recovery after leaving hospital, and the ways in which patients and their family members organise support (or what help they may need to do so). The study will also include the experiences of the family members of patients who did not survive.

Collecting individual accounts allows us to understand disease and treatment not as one-time events but in the context of the everyday life of patients, families and communities. These accounts will contribute to a new section on the award-winning patient experiences website Healthtalk.org. The stories will also help us to explore how patient accounts can be used to co-design improved care and service models.

This study will capture experiences using semi-structured interviews. These will be conducted online and recorded as audio and video.

This material will then be analysed and used to:

• Develop accessible summaries of the main themes that emerge from the interviews. These will be enriched with audio and video extracts, and published as a new section on Healthtalk.org.
• Create a series of short films to raise awareness of the key issues for patients and their families and use in focus groups to inform healthcare service improvement.
• Share learning on how the perspectives and priorities of patients and their families can be used to co-design ICU care and post-ICU support.

The study will be conducted in close collaboration with an advisory panel (made up of patients, patient relatives, clinicians and researchers) to help inform the interviews, analysis and the potential use of findings in future improvement initiatives.

The advisory panel consists of:

• Carl Gearing (Expert by experience, patient)
• Laurence Penn (Expert by experience, patient)
• Deborah Rowlands (Expert by experience, relative)
• Anna Boniface (Critical Care Physiotherapist at Royal Berkshire NHS Foundation Trust)
• Joanne Outtrim (Clinical Nurse Specialist, Critical Care and Senior Research Nurse (Long-term COVID support), Cambridge University Hospitals NHS Foundation Trust)
• Kate Tantam (Specialist Senior Sister in the Intensive Care Rehabilitation Team at University Hospitals Plymouth)
• Dr Tom Bashford (Registrar Anaesthetics, Cambridge/King’s College London)
• Dr Luke Hodgson (ICU specialist consultant; Head of COVID research, Western Sussex Hospitals NHS Trust)
• Professor Rupert Pearse (NIHR Research Professor and Consultant in Intensive Care Medicine; Clinical Director for Research and Development; Queen Mary University of London and Barts Health NHS Trust)
• Professor Kathy Rowan (Director of ICNARC; Intensive care researcher)
• Vanessa Eade (Operations Assistant, University of Oxford)
• Ruth Sanders (Research Delivery Project Manager, University of Oxford)

• Syed Ahmed (Research Degree Student at University of Amsterdam): Interviews conducted in Urdu
• Dalia Adel (Research Degree Student at London School of Hygiene and Tropical Medicine): Interviews conducted in Arabic
• Sagana Thayaparan (Research Degree Student at London School of Hygiene and Tropical Medicine): Interviews conducted in Tamil