Research

Why do we do research?

Phyllis Tuckwell wants to make sure that you and your family receive the best possible care and support.  Carrying out research helps us to understand the needs of those that we are caring for, so that we can best support future patients and families.

What type of research do we do at Phyllis Tuckwell?

The research we support usually explores how the different aspects of care including physical, social, spiritual and psychological aspects, can be improved for patients, and their families and carers.

Common research methods that we use are:

  • one to one interviews with a researcher,
  • focus groups
  • questionnaires.
Current research projects

We are currently actively recruiting patients for two research projects.
We are also promoting the “Join Dementia Research” project. Please see the video below.

The Motor Neurone Disease (MND) Register for England, Wales and Northern Ireland. The Motor Neurone Disease Association (MNDA) website contains information about research projects that people with motor neurone disease and their carers might be interested to hear more about.  If you would like to learn more about any of these research projects or you think you might be interested in taking part then please click on the link below to be directed to the MNDA website

Exploring the impact of audio-recording for Hospice Patients; The Hospice Biographers Model.

This study based at the Brighton and Sussex medical school wants to find out more about the experience of completing an audio-biography (life story) and the effects of receiving an audio biography from a loved one. The researchers are conducting one to one interviews with people who have either recorded or received an audio-biography to understand more about what the experience was like and what can be done to improve the experience for others of recording or receiving a biography in the future.

Motor Neurone Disease

This page provides details of current motor neurone disease related research projects that patients and/ or carers can contact directly if they are interested in finding out more information: https://www.mndassociation.org/research/get-involved-in-research/take-part-in-research/

Want to know more?

To find out more about research at Phyllis Tuckwell please speak to a member of the research team:

Dr Jo Vriens (Palliative Medicine Research Consultant) – Jo.Vriens@pth.org.uk

Louise Groves (Palliative Research Nurse) – Louise.Groves@pth.org.uk

If you are invited to be part of a research study, you will be told exactly what being in the study will involve. If you don’t want to take part, you are free to say no. If you do agree to take part, you can change your mind at any time. You do not have to give a reason why you changed your mind, and saying no will not affect the care you receive.