NIHR CLAHRC West receives funding to explore online information about end of life care

The Elizabeth Blackwell Institute at the University of Bristol has awarded researchers at NIHR CLAHRC West £1,600 to carry out a survey of online resources for people looking for support for end of life issues.

The project aims to produce a list of resources for organisations, such as GPs, nursing homes, voluntary groups and the Citizen’s Advice Bureau, to give to people, and their families, at the end of their lives. The researchers will also meet community groups in Bristol to explore what they think about the online information that’s available and how it could be improved.

When there’s no longer a hope of curing a patient’s disease, the quality of their final weeks and months is important. For both patients and their friends and families, accessing information and support services specifically for this time in our lives is a vital part of this.

People may want to know about:

• Sources of emotional support
• Hospice options and choices about where they might prefer to die
• Dealing with financial worries
• Communicating preferences about medical treatments or avoiding interventions
• Clinical trials they could participate in
• Arranging organ donation

This is a difficult time when good communication can make things easier for everyone involved, but it can also be hard to achieve this at such an emotional time.

A great deal of information is available online. Being able to find and use this help can make the dying process less traumatic for the patient and for their families and friends.

There is a potential inequality in the support people receive at this important time of their lives. Research suggests that online health information tends to focus on younger people, those with jobs, the educated, students, people living in urban areas and those with ongoing illnesses. This leaves out a lot of people. Older people, people who have had fewer years of education and those who are relatively inactive tend to access information online less, as do those dealing with mental illness and poverty.

The project team includes a CLAHRC West researcher, an end of life doula – an expert in supporting dying people, a hospital doctor, a GP, an information specialist and medical students learning about research, all with an interest in end of life care. This research could lead to a bigger project to help make support for people at the end of their lives more accessible.