Published: 28 September 2022
Professor Catherine Walshe, Co-Director of the International Observatory on End of Life Care at Lancaster University, explains how delivering research in care homes is becoming increasingly important with an ageing population. She discusses how research can be championed and facilitated in these settings.
With millions of us living longer with ever-increasing care needs, providing effective care for older people living in nursing homes is now more important than ever.
An estimated 361,000 people live in UK care homes, with this figure expected to rise in line with an ageing population.
Research is a key driver in the continuous improvement of health and social care services, including providing dignified end-of-life care for care home residents, many of whom are living with dementia. But how can we champion and facilitate research in what can be a challenging care environment?
Engaging with nursing homes
NIHR has emphasised its commitment to social care by recently changing its name, and since 2006 has invested over £200m in more than 470 social care research projects across its portfolio, with £90m worth of NIHR-funded social care studies starting in the last three years.
When undertaking research in the NHS, researchers can benefit from organisational structures and workforce to support research delivery. But researchers working in the care home sector often need to negotiate conducting research with individual nursing homes.
Meanwhile there are challenges of carrying out research among people living with advanced dementia - including consent procedures among this vulnerable group, and maintaining their dignity.
I’ve witnessed these difficulties first-hand during my recent NIHR-funded Namaste feasibility study looking to improve the lives of this group - some of whom can spend long hours alone in their rooms. Care home staff can often find it hard to engage them in day-to-day activities.
We assessed the feasibility of the Namaste Care programme - an initiative seeking to give comfort, pleasure, calm and increased social engagement to residents through a personalised schedule of meaningful activity and sensory stimulation through music, movement, colour, taste and touch. Offering residents’ familiar items from a personal memory box, using relaxing room scents and hand and foot massages were among activities. Residents wore ‘actiwatches’ - smartwatch type devices - for us to measure their sleep and activity, and we also assessed quality of life and quality of dying.
Getting managers on board
Care homes joining our study had to take ‘a leap of faith’. They had to deliver a new way of providing care to residents, as well as be involved in routine data collection for the research itself.
Staff had to navigate this within the busy workload of the care home - ensuring colleagues were engaged with the research and the new intervention. Managers were crucial in facilitating this and their keen involvement was a real predictor of how successfully the research was delivered.
One of the recruitment resources we harnessed was the NIHR’s ENRICH Network, which brings researchers together with care home staff, residents and their families. It’s invaluable for helping researchers set up and run studies effectively and collaboratively in care homes.
Being part of ENRICH meant we were part of a research active community across care homes, sharing good research practice, and facilitating active research support alongside the adoption of the study onto the Clinical Research Network portfolio.
Our final results revealed Namaste Care might benefit this patient group in these settings and we consider that, with some changes, this trial offers a model for a larger study to assess the effects of the programme in nursing homes.
Keeping the focus on people
Care homes increasingly will be where many, if not most, people will die. It is important the care they provide is evidence based, and that involvement in research becomes part of the fabric of how care homes operate. This requires a real shift in research engagement and activity. It is essential that care home staff, residents and their families are fully involved in setting the research agenda, guiding and steering the way the research is planned and conducted.
This will lead to more relevant research, addressing the questions that matter to those in the care home sector. It is important to remember however, that, as with all research settings, the real focus is on people. People with palliative care needs move between settings regularly, for example, from home, to hospital, to hospice, to care home. Research is not ‘health’ or ‘social care’ research, but research to enable people to be cared for, and to die, in the best way possible. We don’t need silos, but to work on ways for research to be relevant between and across settings.
Professor Catherine Walshe, Co-Director International Observatory on End of Life Care, Division of Health Research, Lancaster University
Professor Walshe has developed an illustrated booklet and animated video aimed at nursing homes staff, which may also be helpful to friends and family to help explain Namaste Care in more detail. The study was funded by the NIHR’s Health Technology Assessment Programme (HTA).