ENRICHEnabling Research in Care Homes
Engaging care home residents in research (ENGAGE project)
Brittany Nocivelli is a PhD student at Cardiff University, School of Medicine, working in the Division of Population Medicine and the Centre for Trials Research groups.
I previously graduated from Cardiff University with BSc and MSc degrees in Psychology. One of my research interests is in research inclusivity and my PhD project focuses on identifying the
barriers and facilitators to care home resident research participation, and the development of an intervention to support residents in decision-making and advance planning for research, which I will talk about in this blog.
Background of project
Almost half a million older adults live in care homes in the UK but are often underrepresented and excluded from research that could benefit them. Through my research so far, I have found a variety of reasons for the exclusion of care home residents, including resident-related factors such as dementia and impaired capacity, strict research-related requirements, and gatekeeping.
It’s also important to note that around 70% of care home residents have dementia or other severe memory problems and are less likely to be included in research as a result. It has also been apparent that where care home residents are included, it is often through proxy decision-makers, such as family members, who may have little knowledge of what their views and attitudes towards research may be or find the process too difficult, thereby limiting residents’ opportunity to express their own wishes.
I feel very strongly that, in health and social care research, adequate representation of the population who are likely to benefit from the research is important so that the findings can be applied in practice. Better representation of care home residents in such research may inform and increase the quality of their person-centred care too.
Increasing the opportunities and ability for care home residents to be included in research, including greater inclusivity of residents with cognitive impairment, is urgently needed and something that my project is focused on.
What is known about the barriers and facilitators to the inclusion of care home residents in research?
The first stage of my PhD project was the completion of a review of the literature, aiming to identify resident-related barriers and facilitators to including older people living in UK care homes in research, and identify potential interventions to appropriately modify identified barriers and facilitators. I did find that the isolation of resident-related barriers and facilitators was more complex than I believed going into the review. Because of the interactions between the factors I identified, the inclusion of both direct and indirect factors were decided upon so that our findings were not over-simplified.
The barriers and facilitators I identified through my search were categorised into themes of research design, understanding and beliefs about research, communication, relationships, eligibility criteria, the care home, and preference-based decisions. Sub-themes were also created in some of the categories, for example the care home was broken down into care home staff and the care home environment.
In order to further our understanding about the factors which may present barriers or facilitators to the inclusion of care home residents in research, I now want to consider the views of stakeholders. Input from relevant stakeholders regarding resident research inclusion was noted as missing during scoping of the literature. Exploring these views may help us in the development of a more informed knowledge base going forward.
A survey to explore the views of stakeholders
The next stage of my PhD project is a survey aiming to explore the views of care home residents, families, care home staff and other health and social care professionals who work with care homes, and researchers about:
- current opportunities for residents to participate in research
- decisions about participation
- the barriers and facilitators to their involvement. There will be a particular focus on issues related to equality, diversity, and inclusion.
The findings from the survey will provide stakeholder views about the barriers and facilitators to including care home residents in research. It will also inform the next stages of my PhD project which includes the development of a communication tool to support care home residents to express their views about participating in future research.
How can you help?
We are inviting care home residents, family members, care home staff and other health and social care professionals who work with care homes, and researchers to take part in a short survey to share their views about current barriers to residents taking part in research, and how these could be overcome. You will also be able to indicate if you are happy to be contacted about taking part in an interview to talk about your views in more detail.
Funding disclaimer: This research is funded by a Health and Care Research Wales PhD studentship