Understanding how carers of people with MND experience palliative care in the UK

Developing a deeper understanding of carer's experiences of palliative care in the UK

Much of the research undertaken looking at carers of people living with MND experiences of palliative care has taken place in Australia. This study aims to look into carer's experiences of palliative care in the UK, which allows for the consideration of culture and unique health and social care provision within the UK. The study will include understanding what people have been offered/received, how they make sense of their experience, understanding any areas which may be missing, as well as what areas feel important. This research hopes to assist with the development of a palliative care model.

What does taking part involve?

The study consists of participating in interviews, which can be a choice of an in-person interview or online. As this is a sensitive and potentially emotionally distressing topic a plan of how participants will communicate something is feeling too difficult to discuss, they would like a break or would like to stop the interview will be agreed between the participant and the researcher. The interview should last around 60 minutes and will ask a range of questions around their experiences of palliative care.

Study location


Who can take part?

People who have cared for a spouse with MND through to end of life care and death in the past years. 
• Participants must have cared for their spouse for a minimum of 6 months after onset of symptoms

How can I take part?

If you are interested in participating in the research, please contact the researcher Georgia Steed on G.Steed@soton.ac.uk.

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262