Background of project

As a result of the growing ageing population, almost half a million older adults live in care homes in the UK. Older adults living in care homes also often have the most complex care needs but are 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 in research, including resident-related factors such as dementia and impaired capacity, strict research-related requirements, and gatekeeping. I feel very strongly that, in health and social care research, adequate representation and inclusion 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 quality of life and 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.

My research findings so far

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.  The barriers and facilitators I identified through my search influenced themes surrounding research design, understanding and beliefs about research, communication, relationships, eligibility criteria, the care home, and preference-based decisions. Through our scoping review we identified a need to consider the views of stakeholders to further our understanding about the factors which may present barriers or facilitators to the inclusion of care home residents in research. We have so far completed a survey exploring stakeholders’ views which has helped us in the development of a more informed knowledge base going forward. For example, through our survey findings, we identified discordance between views of some stakeholder groups which may help us understand where intervention may be most effective.

An interview to explore the views of stakeholders

The next stage of my PhD project is an interview stage, 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:

– Resident research participation

– Early discussions about residents’ wishes and preferences for future research participation

The findings from the interviews will inform the next stage 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 an interview to share their views about advance planning for care home residents’ research participation. All participants will receive a £15 Amazon voucher, or gift equivalent upon request, in recognition of their time.

For more information, or if you would like to take part, please contact Brittany Nocivelli at Cardiff University nocivellibe@cardiff.ac.uk

Funding disclaimer: This research is funded by a Health and Care Research Wales Social Care PhD studentship