ENRICHEnabling Research in Care Homes
Welcome to the ENRICH guest blog
Read the real-life experiences of people involved in care home research.
Anyone with a story or advice they'd like to share is encouraged to make contact using the contact us page.
Read about current news and developments for care homes research in the new posts section.
The National Care Forum – Learning the lessons from COVID-19 to enrich research relationships with care home homes
Liz Jones is the Policy Director and the National Care Forum, she has a strong background in social policy, care and support and health and housing. Julienne is Professor Emeritus of Nursing: Care for Older People at City, University of London. Her expertise in aged care has long been recognised internationally. She is best known for her work in care homes and was one of the co-founders of My Home Life (MHL) in 2006.
The COVID-19 pandemic has brought into sharp relief the need for more social care research, especially within care homes. This research clearly needs to be shaped by the priorities of residents, relatives and care providers.
Sue Fortescue was an Information Technology manager in Brussels for over 20 years before retiring to the UK. Her father had vascular dementia, and her mother had Huntington’s Disease and the dementia associated with it. Both have now passed away. In retirement Sue joined the Alzheimer's Society Research Network and now plays an active role in reviewing research proposals and monitoring research projects.
Richard Feynman, the distinguished theoretical physicist and Nobel Prize laureate, once said:
‘Only when you can explain your understanding without jargon and in simple terms can you demonstrate your understanding. This is the work required to learn, and skipping it leads to the illusion of knowledge.’
So why is this use of accessible language important to research?
Those who have applied or are applying for research funding will be aware that the inclusion of a Patient and Public Involvement (PPI) component is one of the key criteria for success. The aim of PPI, as documented in the National Institute for Health Research (NIHR) Central Commissioning Facility Patient and Public Involvement and Engagement Plan 2019/20 is ‘to ensure that patients, carers and the public have a voice in how the NIHR works and that patients, carers and the public get feedback on how they have made a difference’.
In my role as a PPI contributor I have been involved in reviewing the PPI components of several projects over recent years. Both my parents had dementia and my father was in a care home for several years so I have focussed on projects in those areas. PPI can add significant value to a research project and so it is important to spend time thinking about how this will be carried out. It is of equal importance to give some thought to the language used in the proposal as those reviewing the application and monitoring the projects may have worked in an entirely different area. Therefore it is crucial that the language used is such that anyone can understand it in order to provide useful comments.
In my experience, despite the inclusion of ‘Plain English’ sections, research proposals are often littered with abbreviations such as ARC (Applied Research Collaboration) and ICS (Integrated Care System) and specialised terminology such as ‘randomised control trial’ and ‘context – mechanism – outcome configuration’ are mentioned without any contextual information. As a lay person, although I have an undergraduate degree and three postgraduate degrees, and have worked in Information Technology management for over 20 years, I have no knowledge of what these specialised terms mean. Although I am more than capable and willing to spend some time looking up the meanings via Google, it is important for authors to consider their audience. If the proposal cannot be understood by those carrying out the review it will risk being rejected, so it is in everyone’s best interest to write in a manner that is accessible to a lay reader.
The use of accessible language applies also to the documentation of research findings. When I became involved in supporting research projects as a lay member, through my involvement with the Alzheimer Society Research Network, I was amazed to see how much work was being conducted in academia that never reached the carers working in care homes and thus had little or no impact on processes and procedures. This is hardly surprising if, as is often the case, the findings are documented in language that is only accessible to academics and would certainly not be comprehensible to the majority of care workers or relatives of care home residents.
Research related to care homes and dementia is of great interest to many people outside academic circles. Much research in those areas is funded from the public purse and, it could be argued, should be accessible, in some form, to the public.
It is true, however, that those involved in writing research proposals, and journal articles to disseminate research findings, might not have had training in expressing complex concepts in accessible language. Whilst complex terminology might be appropriate for a small circle of experts, this restricts the impact to a wider audience. The NIHR provides useful guidance and other resources are provided at the end of this article. Perhaps universities could give some thought to including modules encouraging ‘Writing for a Lay Audience’.
This ‘Plea for Plain English’ is addressed not only to researchers submitting proposals or writing articles but also to funding organisations, academic journals, and all who are involved in research. Using ‘Plain English’ will not only help to get research proposals accepted but will also help to get research findings disseminated and implemented. This would be a win – win for everybody
Melanie Lovatt is a lecturer in sociology at the University of Stirling. Her research interests include ageing, time and relationships. She is currently leading the ESRC-funded project Reimagining the Future in Older Age.
Melanie Lovatt provides an insight into the importance of material things through her exploration of how interactions with objects can shape the everyday lives of those living in care homes.
What do we want? Useful data. Where do we want it? Care homes – A case for a care home minimum data set.
Dr Gizdem Akdur, Research Fellow, The Centre for Research in Public Health and Community Care (CRIPACC), University of Hertfordshire
Integrated Care Systems (ICS) in England and the recognition of the role of social care as an essential part of care provision for older people underline the need to develop reciprocal systems of working between the NHS and care homes. There is, however, no agreed framework in England for collating, sharing and interpreting data collected by the organisations involved in supporting care homes.
Fawn Harrad is a final year PhD student in the Department of Health Sciences, University of Leicester. Fawn also works part-time as an ENRICH Care Home Research Facilitator at CRN West Midlands.
Fawn’s PhD study explores hospital transfers from care homes. She has recently been redeployed to work in a care home due to the COVID-19 pandemic and was keen to share her experience.
Dr Gemma Wilson is a Health Psychologist and Senior Research Fellow in Applied Health, Mrs Jessica Gates is a PhD researcher and research assistant both based at Northumbria University.
A recent study, funded by the British Academy/Leverhulme Trust, explored older adults’ experiences of using technology (including social media) to connect with others.
The findings highlighted the importance of technology and social media for social relationships, specifically visual communication tools. Although this study was carried out before the onset of COVID-19, and with older adults living independently, there are some translatable outcomes for the adoption of technology for social connection in care homes.
New study funded by the NIHR Applied Research Collaboration Wessex: Good-NIGHT COVID-19 to care-home-based vulnerable individuals
Dr Ryan Buchanan, Academic Clinical Lecturer, Primary Care, Population Science and Medical Education, University of Southampton
Nisha joined Aston University in September 2016, having spent the previous four years as a Clinical Audiologist, and developing research skills within a medical college.
I have a strong passion for the understanding and enhancement of patient outcomes, from service provision to long term clinical management. This is reflected in my research interests to design interventions that will have direct benefit to patients with concurrent health conditions such as hearing loss and cognitive decline.
I am currently undertaking a part-time PhD to investigate the impact of hearing loss and dementia on social isolation in older adults. In addition, I maintain my clinical status by seeing patients part-time for adult aural rehabilitation and tinnitus management.
In this blog I share my thoughts on how Covid-19 has impacted my research project and the importance of keeping in touch with my care home collaborators at this time.
Dr Kellyn Lee, Research Fellow – Ageing and Dementia, School of Health Sciences, University of Southampton
I am passionate about conducting applied research that seeks to improve the experiences of those who live and work in care homes.
In this blog I introduce Material Citizenship (a conceptual framework developed from my PhD) as a way of providing care that supports residents to live an active and meaningful life during social distancing and beyond.
Noreen Orr, Research Fellow, NIHR CLAHRC South West Peninsula (PenCLAHRC), University of Exeter, Wendy Brewin, Creative Spaces Project Manager, Sensory Trust, and Ruth Garside, Senior Lecturer, University of Exeter Medical School
We are passionate about the natural environment and believe that nature is good for the health and wellbeing of older people living in care homes. For over 20 years, Sensory Trust has been developing a range of projects promoting sensory approaches to the natural environment in the belief that it brings social, health and wellbeing benefits. Four years ago, we collaborated on a project to synthesise qualitative evidence (words) on how older people (including those with dementia) describe their sensory engagement with the outside world.
Incorporating Patient and Public Involvement (PPI) into Dementia Research: Alzheimer’s Society Research Network & the DCM™ EPIC trial
Alys Griffiths, Research Fellow, Leeds Beckett University
The Dementia Care Mapping (DCM™) Enhancing Person-centred care in Care Homes (EPIC) clinical trial aimed to understand whether DCM™ reduced behaviours that are often associated with agitation for people living with dementia in care homes.
Emma Randle, Clinical Studies Officer (CSO) at The National Centre for Mental Health, The Barberry, Birmingham
In this blog post, Emma Randle, who is the Clinical Studies Officer (CSO) at The National Centre for Mental Health, The Barberry, Birmingham, reflects on the MEDREV study, which was led by Dr Ian Maidment, a Senior Lecturer in Clinical Pharmacy at Aston University. The study tested the feasibility of staff training (for care home staff and GPs) and medication review (by specialist pharmacists) to limit inappropriate prescribing of psychotropics for Behavioural and Psychological Symptoms of Dementia (BPSD) in people with dementia in care homes.
Anna Volkmer, Speech and Language Therapist/NIHR Doctoral Research Fellow, University College London
Anna completed her undergraduate speech and language therapy degree at UCL, in 2002, before embarking on a career working in neurological conditions, such as dementia. In this blog post, she outlines how patient and public involvement has strengthened her PhD project.
Chris Craig, Research in Ageing Network Coordinator, Collaborations for Leadership in Applied Health Research and Care (CLAHRC) East Midlands
Turning the spotlight on care home research happening across the East Midlands, Chris Craig discovers the breadth of research expertise in the region.
Fawn Harrad, ENRICH Facilitator, NIHR West Midlands
Exploring why care homes should engage in research, and how staff & residents benefit
Carinna Uy, Staff Nurse, Kineton Manor Nursing Home
In this blog post, Carinna UY, Senior Nurse from Kineton Manor Nursing Home in Warwick, speaks with ENRICH West Midlands Facilitator Fawn Harrad about her experience of taking part in a local study
Professor Gill Livingston, University College London
As a doctor researcher within UCL psychiatry, I am concerned with what works to help people with dementia and their families and to generate and help implement research which makes a difference to future dementia challenges.
Professor Steve Iliffe, University College London
Providing an update from the recemt Care Home Medicine conference.
Victoria Simmons, Research Assistant, Oxford Health NHS Foundation Trust
Upon your arrival at a care home the last thing you want to see as a researcher is the care staff cowering away in the kitchen and the face drop of a visiting relative.
Pamela Lacy, Research & Dissemination Manager, Thomas Pocklington Trust
There is a growing body of research into the issues of sight loss in older age. However, little focuses explicitly on the perspectives of older people living in residential care.
Danni Collingridge Moore, Senior Research Associate, Division of Health Research, Lancaster University
It easy to think at the beginning of a study that once care homes have been recruited, the rest of the study will be plain sailing…. think again!
Dr Catherine Quinn, Senior Research Fellow, University of Exeter
When developing a research study there is lots of information on how to design a study; however, there is less guidance available on how to go about collecting the data and working with participants. This is something I reflected upon whilst developing the training for researchers working on the IDEAL study (Improving the experience of Dementia and Enhancing Active Life; www.IDEALproject.org.uk).
Adam Smith, Programme Manager, Office of the NIHR National Director for Dementia Research
The ENRICH initiative has been running for several years, the overall aim has been to improve the support provided to researchers wishing to work with care homes, improve care homes access, influence and involvement in research and address issues with care home residents being underrepresented in research and in clinical trials.
Victoria Shepherd, NIHR Doctoral Research Fellow, Centre for Trials Research, Cardiff University
I have had the honour of being involved in a number of studies involving those living, and working, in care homes over the past few years. This has meant seeing first-hand how challenging it can be for care homes to balance research activities alongside their, often extremely busy, role providing care for those living there. But also, how their commitment to ensuring that their residents are provided with the best possible care is woven through both these roles.
Julie Watson, Edinburgh Centre for Research on the Experience of Dementia at the University of Edinburgh
When a researcher leaves a care home after gathering the information they need, this may be the end of the research for the staff and residents, but it is just the beginning of the next stage of the process for the researcher – analysing and sharing their findings.
Danielle Wilson, Interim Clinical Research Domain Lead, Cognitive Impairment and Dementia, Clinical Trials Facility Manager – West London Mental Health Trust
I first dipped my toe into the world of research almost 10 years ago when conducting a randomised control trial investigating infection control in care homes. We were specifically looking at MRSA infection rates in care homes, when MRSA was an extremely hot topic in the media.
Wendy Mitchell, Join Dementia Research Champion
When people think of research they often think of clinical trials and scientists in white coats in laboratories, but social and technological research is equally important. Research into the best ways to care for people is paramount as current standards often fall short of the ideal. This is often due to, in the past, low pay and low public esteem as to the work that goes on in care homes.
Professor Steve Iliffe, Research Department of Primary Care and Population Health, University College London
There has been an increase in research of dementia end-of-life care in recent years, in this blog Professor Iliffe looks at the progress being made.
Claire Surr, Professor of Dementia Studies, Leeds Beckett University
We have all heard the old adages ‘Never work with children or animals’ or ‘mad dogs and Englishmen’ and I think that sometimes research in care homes and with people with dementia are often perceived similarly by fellow academics; just too difficult to do and only undertaken by the foolhardy.
Working in care home research for the past five years has meant visiting a lot of homes.
I have been working on ENRICH since November 2014 – the ENRICH Project was launched nationally in 2012 but the initiative was not taken up in the West Midlands until late 2014, when we had 1 care home signed up and little research activity. CRN West Midlands is the second largest Network with a population of 5.7 million (the size of Denmark), and houses over 800 care homes.
Professor Jill Manthorpe
Many studies have considered handovers between shifts in hospital settings, but handovers have yet to be explored in care homes.
Diane Bunn, University of East Anglia
‘Thinking about Drinking’ has been at the forefront of my mind for nearly four years now, but it emerged as the title of my study much more recently, when I was trying to think of something that would describe what I was trying to do.
Bernadette Mossman is Healthcare Director and Registered Manager for Vida Healthcare a 70 bed specialist dementia care home, in Harrogate, North Yorkshire rated as excellent by the CQC. In this blog Bernadette expalins what drove her to become involved in research.
The benefits of Care Home research for care homes, residents and families.
My interest in health research began in 1998 when I decided to take a long awaited leap into the nursing profession.
We care home managers are really keen to work with and develop research. So why don’t we?
Opening the EnRICH doors to Care Homes across the East Midlands has been a quiet revolution.
My grandmother died when I was eighteen years old, having been diagnosed with Alzehimer’s Disease several years beforehand. I did not see her much as her dementia started to progress; I believe it would have been a landmine of confusion for both of us.
Danni Collingridge Moore
Improving care in care homes is a national and international priority. I truly believe that a good quality evidence base is key to advocating change, and this isn’t going to happen without care homes being involved in research.
Care home research has traditionally been considered too difficult, and perhaps unnecessary, but while there are challenges to working in this sector, it can be very rewarding. I have reflected on my own experiences working as a researcher in this environment.
The ‘Enabling Research in Care Home (ENRICH)’ toolkit provides information and guidance for researchers, care home staff and residents and supports research in care homes to improve the quality of life and care for all care home residents, especially those with dementia.
The Research Ready Care Home Network connects care home residents, managers and staff with researchers. Why is this important? Well, there are lots of reasons…