How we can better support carers through research

This year’s Annual Marie Curie Research Conference, held jointly with the Royal Society of Medicine, will focus on palliative care in the community – making a difference in practice.

Professor Sheila Payne



Professor Sheila Payne of Lancaster University will be discussing her research at the conference. Here Sheila gives a quick overview about why her work is crucial in bringing benefits to patients at the end of the lives as well as to families and carers.


What is the research you’re presenting about?

I will be speaking about the ‘Unpacking the Home’ study which explores the views of bereaved carers who have provided care for an older people dying at home.

Why did we need to investigate this area?

Family carers provide vital care work and support for dying people and enable them to make choices about end of life care options.

How will the findings help people with a terminal illness or their families?

The paper makes specific suggestions about how family carers can be better supported and the policy changes that are required.

How long has the research taken/will it take?

The two-year study was completed in June 2013.

Who did we talk to (and how many people) and what did we ask them?

We interviewed 59 people living in the southwest and northwest of England and asked them to describe their experiences of being a care provider during the illness trajectory, and what happened during and after the death. We focused on how they perceived their home environment and how care giving impacted on their feelings about their home.

What more do we still need to learn about this topic?

We need more specific information about how family carers manage patients’ medications at home and how they experience continuity of professional services, or the lack of it, throughout caregiving.

The conference will take place on 28 March 2014 in London and will be attended by Marie Curie staff, healthcare professionals, academics and others with an interest in palliative care research. Visit the Marie Curie website for more information and to view the programme. For conference updates on twitter follow the hashtag #communitypallcare.