Annabelle Long is a Chartered Physiotherapist working as a Research Assistant at the University of Nottingham on a Dunhill Medical Trust funded PEACH study, which considers the role of Comprehensive Geriatric Assessment in UK care homes. She has a developing research interest in wellbeing for people with dementia in community environments. In this blog she outlines the potential challenges and solutions in doing research at the health and social care interface.
As practitioners and researchers in care of older people, it is important for us to be continually working to include more dependent groups in research. The reason for doing so is to ensure that the evidence base can reliably be applied to the patients we see in everyday practice. However involving older people with dependency in research can be challenging because cognitive and physical impairments can make standard procedures for recruitment and data collection difficult.
When older people are resident in care homes, things can get even more challenging for researchers.
Around 80% of care home residents live with dementia or a memory problem. Should we be recruiting such a vulnerable group into research at all?
In answer to this first question, “yes, we should.” Interventions need to be tested on the people they will ultimately be delivered to. Complex health service interventions need to be tested on people with complex health needs including, where relevant, those with cognitive impairment.
But if that person cannot give their consent – how can this be achieved?
As with all research, the case of diminished capacity is problematic. An additional issue in care homes is that guidance regarding who can act as a consultee can be variable. In some cases, ethics committees have been known to accept care home staff acting as consultees; in other cases, this is deemed unacceptable, as staff have been regarded as being directly employed by the potential participant. Using family members is often the preferred option, but they are frequently of working age and do not live close by. This means that they often visit outside normal working hours, making contact more challenging. Recent studies in care homes have found that using family consultees can be both time and resource demanding and research teams need to build adequate time and manpower into their protocols if they are to adopt this approach.
Are there any solutions to this recruitment challenge?
One solution can be to map times when care homes have most visitor traffic and modify researcher schedules to better fit this time. Meeting on neutral ground, such as University premises which may be closer to where families work, is another alternative to enable researchers to work more flexibly around the needs of working age relatives. Where relatives are impossible or very difficult to contact it can, with support of the research ethics committee, be agreed that an impartial consultee be appointed and contacted by the research team. This enables even people with limited or no family contact to be involved.
There is need for a flexible approach to recruiting and it cannot be seen as the responsibility of just one researcher. A team approach is needed and care home staff need to be recognised as being core to successful research. Research teams need to work within the care home schedule. Times such as early mornings and mealtimes are expected to be busy and will probably not be the best time for recruitment. An efficient use of time can be to use these busier periods for tasks which don’t involve the resident. Quieter periods within the home schedule can then be used for face-to-face recruitment.
Many care homes display the quote “residents do not live in our workplace, we work in their home.” Researchers working in care home settings need to be mindful of this. Staff can act as gatekeepers, limiting contact between researchers and residents if they feel it is not in the best interests of their residents and this can be legitimate. It is important that researchers engage care home staff to facilitate participation from care home residents who wish to participate.
Recruitment plans and targets need to be structured to account for unanticipated changes. Older people with frailty are more vulnerable to infection and it is not uncommon for care homes to be closed to visitors due to outbreaks. This needs to be considered when planning studies. Use of initial feasibility studies to work out how such practical issues will influence schedules in a full study can help to identify how frequently such issues are likely to arise and the challenges they might pose.
Another practical challenge when collecting longitudinal data is the varying archiving policies in care homes. Knowing the frequency with which a participating care home archives records and planning data capture around this is essential.
Researching in a care home setting can be daunting if you are not used to the environment and it can often feel that you are an imposition. It is important to realise that residents don’t always carry the same baggage about this that researchers do. From the perspective of a resident who has relatively few visitors, research participation can be seen as an interesting break from the norm. Taking some extra time to chat and find out a little about them can, in the long run, lead to quicker and richer data collection than adopting a more business-like approach. It’s also more fun for everybody involved.
It is important that research is conducted into the needs of older people in care home settings but, when planning studies, awareness is needed of the recruitment difficulties in this population and the need for a flexible approach. It is often the case that no single approach will be appropriate and researchers need to be adaptable and willing to adjust to changing circumstances. Further advice on conducting research in care homes can be obtained by speaking to your local Enabling Research in Care Homes team who are employed as part of the NHS National Institute of Health Research Clinical Research Network.