Guest Blog written by Victoria Shepherd, NIHR Doctoral Research Fellow, Centre for Trials Research, Cardiff University on Monday December 19, 2016
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.
We know that research is essential to improving the care, treatment and quality of life of all those in our society, especially the most vulnerable. We also know that older people in long term care are likely to be more frail and have more long term health conditions than those living in their own homes. As a result, care homes are increasingly providing more complex care than was previously needed. We also know that, compared to hospitals and other care settings, there is less research evidence for much of the care provided in care homes. This is partly due the challenges of carrying out research projects in care homes1 which often involves people unable to provide informed consent for themselves2.
There are lots of areas that require further research, but limited resources and funding available. So how do researchers like us, and those that fund research, know which the most important areas to address are?
One solution is to ask those involved in providing care ‘on the frontline’ to take part in deciding what the priorities for future research are.
Words: Chris Creed
At Cardiff University we decided to carry out the Research Priority Setting in Care Homes study to look at the most important areas for research to focus on3. We asked people involved in providing care for older people in care homes to help us identify the top unanswered questions about caring for residents that they wanted research to address. Further rounds of the survey were carried out to reach agreement on the top rated priorities.
How did we establish this set of research priorities?
Care home staff could take part in the study in a number of ways. The local ENRICH networks kindly agreed to pass on the information about our study to care homes via email and newsletters. This meant that they were able to take part either by completing an online survey, by completing and returning a paper questionnaire, or by attending a local workshop event hosted by some local ENRICH network teams. The ENRICH network is not currently established in Wales, so we contacted local care homes that had previously participated in our research studies directly. Information about the project was also shared by websites that are commonly accessed by care home staff, such as carehome.co.uk.
ENRICH workshop events were kindly arranged in the Yorkshire and Humber, East Midlands and West Midlands regions by the local teams. These were fantastic opportunities to meet a large number of care home staff (and research teams) and hear about the challenges they encounter, and their ideas for future research with the context and background to the questions they raised. I greatly enjoyed meeting the care home staff, they gave me a real insight into their daily experience of managing and providing care, and some of the issues they encountered. They also appreciated meeting people from other homes to share common experiences, which is a real benefit to being part of the ENRICH network of Research Ready Care Homes.
By the end of our survey, 144 topics for further research had been generated. After ranking, the top 15 research priorities included questions on person-centred care, dignity, appropriate staffing levels, and training and support requirements for care home staff. The top 15 questions can be found on Oxford Journals’ age and ageing website.
The importance of person-centred care is reflected in almost all health and social care policy documents, so it is perhaps unsurprising that it was rated the number one topic; although there is a lack of consistency in what is understood by the term. A few of the top priorities were linked to staffing - the level and quality of staff, and how to recruit and train staff. Again, these reflect the challenges widely encountered in the care sector. Also, how to provide end-of-life care, particularly for those with dementia, was a strong theme which may reflect a growing awareness that end-of-life care is increasingly being provided in care homes, and that more research is needed into palliative care for non-cancer conditions, such as dementia.
Unexpectedly, two other groups (care home staff who did not take part in the first rounds, and health and social care professionals including occupational therapists, doctors and social workers) also took part in the final ranking. This was because the link to the online survey was shared with colleagues and other groups by people who were interested in taking part. Their results had a similar ordering to those from the original care home expert panel, showing that they also considered that these were the most important topics.
The importance of care home involvement in planning future research
We also found that those providing care for older people living in care homes valued being involved in planning future research. This is best illustrated by one of the questions that asked “How can projects truly engage with care homes rather than ‘doing something to’ them?” What elsewhere has been described as doing ‘with’ rather than doing ‘to’, preferably with care home residents themselves and their family and friends. Understanding the care environment, and ensuring their voices are heard, is vital. We know that there is a strong link between involving stakeholders in the planning and design of research, and the quality, utilisation and outcomes of the research. I believe that involving care home staff is essential in order to develop care homes as a research environment.
We are sharing the results of our study with other researchers, charities and organisations that fund research, and health and social care professionals. We hope that future research will help to answer these questions, and lead to improvements in the care for older people needing long term care.
We also think that further research to identify the research priorities of others involved in the care of older people, such as health and social care professionals, care commissioners, care home residents and their friends and families would be valuable.
We are truly grateful to the care home staff, ENRICH networks, and healthcare professionals who took part in the study. Thank you!
1. Shepherd V, Nuttall J, Hood K, Butler CC. Setting up a clinical trial in care homes: challenges encountered and recommendations for future research practice. BMC Res Notes 2015; 8: 306. http://bmcresnotes.biomedcentral.com/articles/10.1186/s13104-015-1276-8
2. Shepherd V, Research involving adults lacking capacity to consent: the impact of research regulation on ‘evidence biased’ medicine. BMC Medical Ethics 2016 https://bmcmedethics.biomedcentral.com/articles/10.1186/s12910-016-0138-9
3. Shepherd V, Wood F, Hood K. Establishing a set of research priorities in care homes for older people in the UK: a modified Delphi consensus study with care home staff. Age Ageing online November 16, 2016 http://ageing.oxfordjournals.org/content/early/2016/11/14/ageing.afw204.full