New University of Surrey study aims to develop support for those grieving in anticipation
The tool aims to address anticipatory grief before bereavement
The University of Surrey is spearheading an 18-month study aimed at creating the first dedicated support tool for unpaid carers experiencing anticipatory grief while caring for older individuals.
According to research, one in four carers experiences grief before bereavement, a distress that is often overlooked and lacks adequate support.
This project is funded by the National Institute for Health and Care Research (NIHR) and is led by Dr Richard Green and Dr Sarah Combes.
Collaborating with St Christopher’s Hospice in South London, the team will investigate the experiences of unpaid adult carers who look after older individuals with complex health conditions.
Dr Richard Green explains what the ideal outcome of the study will be.
"What we want to do is produce sort of guidance, information, awareness raising, kind of literature and uh media that we could share with these organisations so that what we're trying to do is help people recognise it earlier, get better support earlier."
Understanding anticipatory grief
Anticipatory grief is characterised by psychological distress experienced in anticipation of losing a loved one.
It differs from bereavement and can begin with a diagnosis or as an individual’s health declines.
For carers of older individuals with severe frailty or multiple long-term illnesses, anticipatory grief may persist for extended periods.
Research links it to poor sleep, anxiety, depression, and reduced self-care.
Despite this, support services often focus on post-bereavement, leaving anticipatory grief largely unaddressed.
Dr Green added that due to the nature of being a carer, people may not even realise what they're going through
"Changes can be very gradual. So the person that you're caring for may just not be able to get out and about as much and the things you're able to do with them may change.
So you may not be thinking about these things, but you might be feeling sort of the upset or the stress."
Focus on overlooked groups
The study aims to fill a gap by excluding carers of individuals with dementia or cancer, focusing instead on those supporting older individuals with multiple chronic conditions or severe frailty.
This group has been largely overlooked, as their caregiving journey is often slow and uncertain.
Initially, an integrative literature review will map existing knowledge.
This will be followed by a national survey involving at least 200 unpaid carers across England and in-depth interviews with 20 participants to deepen understanding of carers’ experiences.
Dr Green added these interview will be a critical part of the study
"Those interviews will be absolutely crucial because they'll really help us to unpick like our emotions, what we're feeling and how that relates to everything going on in our lives.
That is really hard to do and can't just be done through a survey. So the interviews give us the space and the time to really try and talk those things out"
Findings from these efforts will inform consultations with key stakeholders to develop the foundations for a support tool addressing anticipatory grief.