York study to evaluate most effective support for end-of-life carers

A team of health scientists at the University of York has received funding from the Dimbleby Marie Curie Cancer Care Research Fund to research the educational needs of people providing end-of-life care to terminally ill relatives.

The 18-month study will draw together existing research exploring what family carers have found helpful and supportive when they are taught to care for people with cancer and other life-threatening illnesses. The aim is to develop a fuller and more extensive understanding of carers’ views, enabling better planning and teaching of future education programmes.

Principal Investigator Dr Kate Flemming, from the University’s Department of Health Sciences, said:

“Family carers play a significant and important role in ensuring that people at the end of their life can be cared for in their own home. Carers often need to develop new skills such as how to provide physical care, how to manage symptoms such as pain or breathlessness, in addition to maintaining a balance between their own needs and those of the person they are caring for in order to remain well.”

Several different ways of helping carers with their role have been devised and feedback has been collected. For the first time, researchers from the University’s Department of Health Sciences will draw this qualitative research together in a systematic review, allowing conclusions to be reached about what works best.

Dr Flemming said:

“By systematically drawing together qualitative research exploring carers’ views about how they are taught to care for people at the end of their lives, we can help develop a more extensive understanding of these views, enabling improvements in the way education for carers is planned and taught in the future.

“This in turn, will ensure the most appropriate care is available for the patient who is ill, in addition to ensuring policy and practice can best support the needs of all members of the family involved in end-of-life care.”

The study team includes a carer and a nurse consultant in palliative care, as well as researchers from the University’s Department of Health Sciences.

It is one of five new research projects to receive funding from the joint programme set up by Marie Curie Cancer Care and Dimbleby Cancer Care. Applications to the research fund were invited from research teams around two end-of-life carer-focused areas where there is little existing knowledge. These included the demographic characteristics and personal circumstances of unpaid carers; and educational interventions to help support carers gain the practical and nursing skills they need to care for loved ones at home.