Guest Blog written by Claire Surr, Professor of Dementia Studies, Leeds Beckett University on Wednesday May 25, 2016
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. For example, care homes may be viewed as places where research is poorly understood, where implementing standardised procedures will be resource and time intensive at best and unfeasible at worst and where there is a high risk of things not going to plan. Likewise, many researchers avoid recruiting people with dementia into studies where they could participate, because consent procedures are viewed as too complex or impossible. While in some cases these views may have some basis in truth, in others they are misperceptions or exaggerations often based on a lack of understanding of care homes. I believe such perceptions can be changed if we arm researchers with more robust information on how to conduct effective research in care homes.
I am currently leading a large National Institute for Health Research Health Technology Assessment (NHR HTA) funded study investigating the effectiveness and cost effectiveness of implementing Dementia Care Mapping to help staff to deliver more person-centred care: called The EPIC trial. This has involved recruiting 50 care homes across Yorkshire, Oxfordshire and South London and 741 residents with dementia. We were very pleased at the start of 2016 to have recruited all the care homes on schedule and recruited within nine resident participants of our anticipated target number of 750. So how did we achieve this? This blog will discuss some of the things that have been part of our recipe for success to date.
One of the reasons for our success has been the number of the EPIC research team who have considerable care homes expertise, including both practice, personal and research experience. This has meant throughout the study design, planning and recruitment we have been able to draw on this wealth of knowledge to ensure that what we have planned is going to work.
We allowed 12-months in our project schedule for study set up. This included recruitment of two care homes early to act as pilot sites where we could trial processes and materials and adapt these ahead of commencing recruitment of the remaining 48 homes. We conducted a thorough review after each phase of the research process by gathering views from the care homes, researchers and clinical trials team about how things had gone. Not rushing into recruiting our first homes too quickly stood us in good stead for ensuring our procedures and paperwork were robust and more importantly that.
Monitoring and flexibility
We have also had to monitor things closely, be flexible and be prepared to adapt our approaches if things are not proceeding as we had hoped. Understanding our research is not a care home or manager’s main priority and finding ways to work around individual home schedules, needs and circumstances has been crucial. This has involved submitting minor and major design amendments to the funder and ethics panel (8 to date). Good communication between the researchers, clinical trials unit and myself as Chief Investigator has meant that potential issues have been flagged early. Project team discussion of potential solutions and making effective decisions swiftly about how to manage these has been essential.
We have also been fortunate to have a great team of experienced researchers who have forged good relationships with the homes’ managers, staff, residents and their families. These relationships have been crucial in the research being able to continue in homes where circumstances have changed and where they might otherwise have considered pulling out. For some homes, participating in research has been mentioned as a positive within CQC reports and in the majority of cases the homes, staff and residents have really enjoyed having the researchers around during their data collection weeks. We hope that we have given back some positive benefits to the homes during their participation.
The trial is a team, not and individual project and as a whole team (myself, clinical trials unit, researchers, co-applicants, specialist advisors) we met monthly as a Trial Management Group during the set up and early phases of the project. This meant we could monitor progress and draw on the expertise of the team quickly in addressing issues as they arose. We now meet quarterly but also communicate by e-mail as and when required. As Chief investigator I have found it is essential that I work extremely closely with the Clinical Trials Research Unit staff who co-ordinate all of the trial activities and I am also in regular contact with the researchers at all three recruitment hubs. The researchers across the trial, while geographically spread across Leeds, London and Oxford hubs, work as a team and cross-hub support is always available during busy periods to ensure all work can be managed. All of this teamwork has its foundations in good communication and a commitment by all members to the success of the trial.
These positives experiences do not mean we have not had problems along the way and that we do not continue to do so. Conducting research in any setting is challenging and care homes do have their own specific set of issues to consider. These change with each phase of the project. However, our recipe to date has stood us in good stead for managing issues that keep the trial on track and I hope it continues to do so through to our completion at the end of 2017.