Joint statement of intent of the

UK end of life care Research Interest Group

We are health research funders, care providers and related charities who recognise the need for research to provide the evidence base to underpin care of people at the end of life and to improve the experience of death and dying for individuals, carers and families.

Little research is currently undertaken in end of life care for a variety of reasons including: (click to expand)

Methodological issues: designing good quality research can be challenging because of multiple variables, the need for multi-disciplinary approaches, and the loss of people during the course of study.
Ethical Issues: difficulties in recruitment to studies as professionals may feel that people near the end of life should not be asked to undergo unnecessary intervention or intrusion and obtaining informed consent may be problematic in cases where people lack capacity.
Social issues: Professionals and the public find it difficult to talk about death and dying and may find that conducting research in these circumstances problematic on a personal level.
Research infrastructure: There is limited research infrastructure in hospices and care homes and little capacity to carry out research.

Whilst recognising the many challenges we do not regard any of them as insurmountable barriers to research. We wish to promote high quality research in end of life care by a variety of means, both individually and collectively. Each organisation will participate according to its own strategies and working practices. Actions will include: (click to expand)

Publicising research funding streams which are available for research in this area.
Arranging forum meetings for the sharing of information, experience and expertise, for mutual learning and the avoidance of duplication.
Developing case studies to show what can be done successfully.
Seeking practical, transferrable solutions to problems.
Highlighting end of life care as a priority to funding committees.
Engaging with people at the end of life and their carers to promote research that is important to them and addresses their needs.
Improving the understanding of the state of development of end of life care research by funding committees and peer reviewers.
Organising workshops and writing groups to brainstorm ideas and develop research proposals.
Consideration of training needs and promotion of research in the area to expand and strengthen the community of interest.

Membership

Full members will be research funders who operate one or more competitive peer reviewed funding streams which welcome high quality proposals in end of life care. Other organisations with an interest in end of life care, and who wish to endorse the joint statement may join as Associate members.

To find out more about the UK eolcRIG or become a member email UKeolcRIG@ncri.org.uk.