An Inclusive evaluation of Care at the very end of life (‘I-Care’)

Why does this research matter? 

We know how important it is to have good care and support at the end of life. Poor experiences during those final days are distressing for the individual. They also leave families and communities struggling with their grief. Despite this, we do not know enough about care for people who have died in the ‘community’ – deaths that have occurred at home or in care homes. 

We want to understand more about the care and support during this important time. We also want to find ways to include the experiences from certain ‘under-served’ communities – people who are often under-represented in research studies.  This will help us know how to improve future care.

How will we do this? 

We will work in partnership with people with direct personal experience. Our research team will include Community Researchers, representatives from specific community organisations, who are trained in research skills. 

There are four parts: 

1. We will review research studies about how to increase engagement with surveys conducted with bereaved people. We will conduct 2 workshops. The findings will guide choices about the next part of the research.
2. We will conduct a national survey of 7500 bereaved people, who have experienced the death of someone important, at home or in a care home. We will offer various ways to complete the survey, including online, by post, or over the telephone. Information will be provided in multiple languages. This will help us understand experiences, support needs and areas of care that need improvement.   
3. We will speak directly with 40 bereaved people. We will interview people who self-identify as being part of an ethically, racially or culturally diverse community or who are living on a tight budget. This will help us understand more about supporting someone important who died at home or in a care home.
4. We will conduct workshops to develop recommendations and novel ways to share our findings. These will: 
   • Highlight areas of good care and support
   • Identify ways to improve experiences
   • Recommend how research in this area can help include more people.  

Who is funding this research? 

This study was funded by the National Institute for Health and Care Research (NIHR).

Dr Catriona R Mayland was awarded a NIHR Advanced Fellowship.  

How can I find out more information? 

Please contact Dr Catriona R Mayland: c.r.mayland@sheffield.ac.uk 

Alternatively use the I-Care study email: i-care-study@sheffield.ac.uk 

Or contact Dr Seunghoon Oh, Research Associate: Seunghoon.oh@sheffield.ac.uk 

You can also follow the project on social media:

LinkedIn https://www.linkedin.com/in/i-care-study-8698343a8/  

Instagram https://www.instagram.com/icarestudy2026/

Facebook https://www.facebook.com/profile.php?id=61577808081756