£130,000 study into how terminally ill people are cared for at home

Lancaster University has been awarded over £130,000 to investigate how people care for relatives or friends who die at home. The two year study funded by Marie Curie Cancer Care will feed back into the NHS End of Life Programme and inform government policy on how best to support carers.

The in-depth study entitled “Unpacking the home” will involve interviews with approximately 50 bereaved carers in the North West and South West of England, where there is a large population of older people.

The research will be led by Professor Sheila Payne, Director of the International Observatory on End of Life Care at Lancaster University, who is a health psychologist with a background in nursing.

“We’re going to look at the experience of family members and what it’s like to care for someone at the end of life in their own home. This can be very demanding as the home becomes a hospital, with the bed downstairs, a commode, lots more washing and with the need for 24 hour care. “

In surveys, over two thirds of people say they would prefer to die at home rather than in a hospital but figures show that this is not what happens : the majority die in hospital while over a fifth die in care homes or hospices. Only 18 per cent of people fulfil their wish of dying at home.

Professor Payne said: “Most people want to die at home but not everyone is well supported in this and there may be no out-of-hours support from their GP and they may feel very isolated, particularly in rural areas. People are dying at an older age now, often in their 80s, but this means that their carers themselves are older and may be ill themselves.

“We want to find out how this affects people. It could bring the family together but if there are bad memories of pain and of a lack of support, with a feeling of being unable to cope, this could leave bad memories. We want to find out how people can be better supported at home so that more people are able to have their wish of dying in their own home.”

Established in 2003, the International Observatory on End of Life Care is now a globally recognised centre of excellence for research in palliative and end of life care.

http://www.lancs.ac.uk/shm/research/ioelc/