Why is this Study Needed?
An ICU admission can change not just a patient’s life, but a whole family’s life direction. In the UK around 76% of ICU patients recover and either go on to live normal lives or need rehabilitation to adjust to changes in their health. Sadly, we also know some patients do not survive ICU despite everyone’s best efforts. Coping with a loved one’s ICU admission can be challenging; in fact, family and friends often describe their ICU journey as a roller coaster. Nurses, medical and healthcare teams already offer good support to patient loved ones. But previous research studies tell us more support would be helpful.
What are the researchers trying to do?
The researchers are focusing on a natural human response that can be experienced by patients and their loved ones during a health crisis. This response is known as ‘Anticipatory Grief’. The term ‘Anticipatory Grief’ does not necessarily mean a patient’s diagnosis is terminal, instead, it refers to the way people anticipate and manage single or multiple losses that may arise due to a short or long-term illness. These losses may not solely be related to health and can include unexpected changes in family relationships or life direction. Dealing with ‘uncertainty’ or living in a ‘state of limbo’ are other terms used to describe the experience of Anticipatory Grief.
Research has told us there is a need for more health and care services to screen for Anticipatory Grief and offer support. We want to offer resources that help patient loved ones recognise and manage Anticipatory Grief responses they may be experiencing during their ICU journey. But we need to complete this study first because there is not enough research data to tell us how patient loved ones may be experiencing or managing Anticipatory Grief in ICU settings.
What is a Co-design Study?
Co-design is a term used to describe collaborating or working with others. The National Institute of Health and Research (NIHR) recommend that researchers work with patients, family, health and care staff and other stakeholders to ensure research being carried out meets the needs of the people it is intended for. We are following this recommendation by undertaking this research as a co-design study. During the study we will collaborate with people who have experience of visiting a loved one in ICU, or being discharged from ICU as a patient, or working within ICU teams or other relevant health and care services.
