Help shape the future of hospice support

Care at the end of someone’s life isn’t just about comfort—it’s also about helping families understand what’s happening. Get involved in research that’s working to improve end-of-life care—supporting better comfort and reducing distress. 

As part of this research, the university is working with carers, families and healthcare staff to learn more about something known as the "rattle", a common change in someone’s breathing near the end of life.
To help reduce this “rattle”, healthcare professionals may change the person’s position, reassure families, or use medicine to dry up fluid in the person's throat”. These medicines are commonly used, but we don’t fully know how well they work or if they cause any discomfort because the person is usually unconscious. 

This study will explore whether giving medicine straight away is more helpful than other approaches, such as physical care and clear communication. By better understanding how to manage “rattle”, we hope to support patients and families through this difficult time with greater comfort and reassurance.

What experience do I need to help?

There is no specific training required but PPI members will be fully briefed on what the project entails and encouraged to ask any questions they like. 

What will I be asked to do?

As a PPI co-applicant, you will:

• Be involved from the very beginning—helping to design the study and contribute to the funding application.
• Share your insights especially on the qualitative aspects of the study, including how we gather and understand people's experiences.
• Help write the plain English summary to ensure it’s clear and accessible.

If the project is funded, you’ll continue to:

• Work with the team to gain ethical approvals.
• Help create clear, compassionate information for patients and carers.
• Co-design interview questions and help interpret the findings from a public or patient perspective.

How long will I be needed for?

Time Commitment: Four hours 

• Number of meetings before Stage 1 submission: Four
• Meeting frequency: Monthly
• Length of each meeting: Approximately one hour
• Preparation and review time per meeting: Around one hour
• Ongoing involvement: If the study is funded, the public contributor will be involved for the duration of the project.

What are some of the benefits for me?

The PPI members will benefit from making a positive contribution towards the research and will gain knowledge and insight in to end-of-life care and the experiences of healthcare professionals and family carers when caring for those who are dying.

What support is offered?

• Cover of reasonable travel expenses and additional carer or childcare costs.
• Offer payment for time of £25.00 per hour (people can request less if they are in receipt of state benefits). 

Have a look at our guidelines for more information. If you are receiving any benefits, you can access confidential advice from the Benefits Advice Service for Involvement.  

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