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COMPLETE: INVOLVing pEople with cognitive impaiRment in decisions about their hospital nursing care (INVOLVER): a pilot study

Principal Investigator: Professor Jackie Bridges Team members: Professor Jackie Bridges (Professor of Older People's Care, School of Health Sciences, University of Southampton), Dr Jo Hope (Lecturer, School of Health Sciences, University of Southampton), Dr Tula Brannely (University of Bournemouth). Professor Katie Featherstone (Univesrity of West London)

Start: 1 January 2020

Ended: 31 December 2022

Partners: University of Southampton, Solent NHS Trust, University of Bournemouth, University of West London

Collaborations developed through project:

  • Alex Iles (grant co-applicant/film contributor) and the Treat Me Well Group (Southampton Mencap) (grant development and film contributors)

  • The Grow Project, Southampton (film contributors)

  • Different Strokes (Southampton) (film contributors)

  • Mayes Bahrani (Southern Health NHS Foundation Trust Patient Experience Group) (grant co-applicant)

  • Catherine Mead (Portsmouth Hospitals NHS Trust, grant collaborator)

  • Rosalynn Austin (Portsmouth Hospitals NHS Trust, grant collaborator)

  • Francesca Lambert (University of Southampton) (grant co-applicant/film project co-applicant)

  • Sofy Bazzini (Digital Learning Team, University of Southampton) (film project co-applicant)

  • Pippa Collins (University of Southampton) (film project co-applicant)

  • Anthony and Caroline Scott-Gall (film contributors)

Lay summary

We want to help nurses look after their patients in hospital. We want to help them find out how each patient likes to do things like getting clean, going to the toilet, eating and drinking.

Some people have to go into hospital to get better. Sometimes, when they are in hospital, the nurses don’t ask them enough about the way they like to do things. For example, if they like a bath or a shower. Or if they need help going to the toilet. Or if they would like to walk about. Or what food or drink they like.

Not being asked about these things is not helpful. It might mean that people end up getting sicker and staying in hospital longer. Or they may go home needing more help from their family.

People with dementia, learning disabilities or stroke may not be asked these questions about what they like. Sometimes the nurses don’t know how to do this well. Sometimes they know how to do it but can’t do it. The reasons they can’t do it are not well understood.

We are a group of people who want to make this better. Some of us work at a university finding things out. Some of us are nurses. We want to include people with dementia, learning disabilities or stroke in our group. This will help us think about how to make things better.

We think we can help nurses by using ideas that have worked in other places. When people like us have an idea about how something can be made better, we try the idea out and see if it works.

Summary of findings:

We have been looking for good examples of how hospitals have changed what they do to make sure people with dementia, people with learning disabilities and stroke survivors are included in making care decisions in hospitals. We looked at all the research in this area and found only 11 studies that did this! Many more studies said they were making care ‘person-centred’ but did not look at how they could directly include people in decisions about their care. We are currently looking in detail at these studies to see what works well, what can go wrong and which bits work best. We will also check if the people who use or might the service were also involved in the design of the changes and testing them. We will report back soon!

Our set of short films, Good Care For Me Is… were co-created with people with learning disabilities, stroke survivors and somebody living with Alzheimer’s. We won funding for this from the University of Southampton’s Public Engagement with Research unit (PERu) PER Development Funding Call 2020/21. These have been used in teaching nursing students at the University of Southampton and we are exploring where else they might be used to teach healthcare staff at the University and other good places. They will also be used in research to help design changes to services with patients and staff.

Dr Jo Hope has submitted two funding bids to follow the care of people with learning disabilities in hospitals, to try to understand why care between wards varies so much. They both passed the first round and we are still waiting for the final outcome for the NIHR grant

Dr Jo Hope has been developing ideas on how to involve people with profound learning disabilities in research and has published about this with her PhD team.

What did we achieve?

Good Care For Me Is… films are part of the pre-registration nursing curriculum at the University of Southampton, supporting future nurses to understand how they can improve care for people living with dementia, people with learning disabilities and stroke survivors

We have found new collaborators in the health service, and people with lived experience who are co-applicants on our successful Stage 2 NIHR Research for Patient Benefit grant called: Improving the care people with learning disabilities receive in hospital: an ethnographic study examining the experiences of people with learning disabilities and the organisation and delivery of their care.

Our papers on the inclusion of people with profound learning disabilities in research are challenging research orthodoxy on who can and cannot be directly involved in research

We have shared findings from our previous research in Nursing Times, which explores what makes it difficult for patients to ask for help in hospital and why this is more difficult for people with dementia


What's next?

We will be publishing our systematic review into interventions to engage people living with dementia, people with learning disabilities and stroke survivors in nursing care decisions in hospital settings

We will explore how our films about care experiences among people living with dementia, people with learning disabilities and stroke survivors might enable more healthcare students and workers to develop their understanding of supporting these patient groups

Dr Jo Hope is developing a research programme to explore how hospital care can be improved for people with learning disabilities

We will explore and share practical strategies of how people with more profound communication and understanding difficulties can be involved in research and care decisions

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