New Marie Curie funded research on end of life carers

Research funded by Marie Curie Cancer Care on the experiences of carers looking after people with a terminal illness at end of life, launches today.

The research carried out by the Health Experiences Research Group, University of Oxford, makes up a new section of the award-winning experiential health website Healthtalkonline.

'Caring for Someone with a Terminal Illness' includes video and audio clips of 40 carers who describe the unique combination of hard physical work, exhaustion, conflicting emotions and the rewards of caring for a loved one.

Each year, thousands of people find themselves having to care for someone diagnosed with a terminal illness - a commitment for which many people feel ill-prepared. Many do not anticipate all the demands that will be required of them as their caring role develops and how this role may impact on their life.

While a number of the research participants express gratitude for the compassionate care and support they have received from specialist care providers, others describe the pain of no support at all at this critical time.

Dr Fiona Barlow, a member of the Research Group, said: “The process of managing a terminal illness can change well-established roles, often reversing the way parent and child as well as partners relate to each other.

“Many carers describe conflicting emotions: wanting the person to remain alive for as long as possible while anxious that they do not suffer - at the same time as wishing for an end to demands that cause such emotional and physical exhaustion.

“However rewarding the experience of being a carer is, finding support from statutory services can be difficult especially for those who are not aware of the existence of services such as palliative care in the community. What’s more, once accessed, these services can vary significantly in quality and quantity.”

Imelda Redmond, Director of Policy and Public Affairs at Marie Curie Cancer Care, said: “Marie Curie provides high quality end of life care to patients with terminal cancer and other illnesses and most crucially, support to families and carers at the time they need it most.

“We believe that everyone should have access to these services and that people receive the right care and support at the right time in their place of choice. This section of Healthtalkonline will help carers understand that they are not alone and help them overcome the barriers that exist in preventing people having a good death surrounded by their loved ones, with the right support in place.”

The new section, with an introduction from Marie Curie Ambassador Edwina Currie, can be viewed on the Healthtalkonline.

Watch a selection of carers experiences

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