A groundbreaking eighteen month research project led by the University of Surrey is underway to understand and support unpaid carers who experience grief before bereavement. The Supporting Resilience Going Through Anticipatory Grief study aims to address the emotional distress that arises when caring for an older person whose health is gradually declining.
What is anticipatory grief?
Anticipatory grief is the sadness, anxiety, and worry felt when expecting the loss of a loved one in the future. Research indicates that this form of distress affects approximately one in four unpaid carers. It is known to contribute to significant challenges including poor sleep, low mood, anxiety, and a reduced ability for carers to look after their own health. Despite its profound impact, almost all existing support services focus exclusively on helping people after a death has occurred, leaving those experiencing grief during their caregiving role largely unrecognised and unsupported.
The research project
Funded by a grant of nearly £250,000 from the National Institute for Health and Care Research (NIHR), the study is being led by Doctor Richard Green and Doctor Sarah Combes from the University of Surrey. The research team is working in partnership with Saint Christopher’s Hospice in South London to investigate these experiences and create a practical framework to guide future support services.
While previous research into anticipatory grief has focused on conditions such as cancer or dementia, this new project specifically looks at a previously overlooked group. The study focuses on unpaid adult carers supporting older people aged sixty five and over who are living with severe frailty or multiple long term illnesses. In these situations, the caregiving journey can be slow, uncertain, and emotionally demanding, with losses beginning long before the end of life as a loved one gradually loses their independence and capabilities.
What is involved?
The research consists of three main stages. The team will first review existing research to map out current knowledge and available support. Following this, they will conduct a national survey of at least two hundred unpaid carers across England, alongside twenty in depth interviews to explore individual personal experiences in greater detail. Finally, the team will collaborate directly with carers and service providers to design a logic model that will shape future care policies and support systems.
Who is it for?
The project team is actively seeking the support of unpaid adult carers in England who look after an older person with complex health or social care needs. By sharing their experiences, carers can help ensure their voices are heard and contribute directly to the creation of fairer, more preventative support services.
How to participate
Individuals who want to find out more about the research or discover how they can participate can contact the project team directly by sending an email to strength@surrey.ac.uk.
