Real stories

Sue's story: Supporting research in care homes

My experience 

When my father was in a care home in County Durham, I was working as an IT Manager in Brussels.

I called the care home most mornings to find out how my father was, whether he had slept well, if he was eating his meals, whether he was socialising with the other residents. 

I was his only daughter and I wanted to know how he was coping with life in the (very good) care home.  

His dementia was so severe that he no longer recognised me and it was impossible to communicate with him over the phone.

A communication issue

My calls would generate a flurry of activity. The day staff would consult the night staff records and then need to talk with the staff in the dining room as well as activity coordinators. Meanwhile I would be hanging on, waiting for the information, then I would have questions … and so it went on. 

There has to be a better way of managing data. Hopefully progress will be made by the work of the ‘Developing research resources and minimum data set for Care Homes Adoption and use' (DACHA) project.

Data in care homes 

The NIHR-funded DACHA project is a four-year study led by Professor Claire Goodman at the University of Hertfordshire.

The aim is to explore and enhance information and data about how residents' quality of life and care data is more systematically shared between health and social care teams working with care homes. 

The team hope the project could deliver a step-change in how we understand the needs of people living in care homes.  This could be a resource to avoid unnecessary duplication by researchers, but also, those interested in improving the quality of care homes across the country.

As Professor Goodman commented: “We rely on care homes to provide care and support to some of the most vulnerable members of our society

"By bringing together existing data systems, creating a minimum data set and researching care home residents’ needs, we can make recommendations likely to improve residents’ quality of life.

Volunteering as part of the DACHA team

"During the next few weeks, we will be recruiting Research Network volunteers to assist with the PPI aspects of the DACHA project. We look forward to welcoming these volunteers, who all have valuable experience to share.

"In the past family members often lived closer together and were able to visit their relatives daily. These days we have to travel, sometimes great distances.

"And, fuelled by sensational media reports, we worry, constantly, about our loved ones in care homes. Making available relevant data in a timely manner can go some way to alleviating our concerns."

Funding Acknowledgement

This study/project is funded by the National Institute for Health Research (NIHR) Health Service Research and Delivery programme (HS&DR NIHR127234) and supported by the NIHR Applied Research Collaboration (ARC) East of England. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

DACHA is a collaboration between the Universities of Hertfordshire, Cambridge, East Anglia, Newcastle, Leeds, Nottingham, Kent, Exeter, The Health Foundation, NIHR ARC East of England & National Care Forum