Engaging care home residents in research: identification of barriers and facilitators and the development of an intervention to support residents in decision-making and advance planning for research (ENGAGE Study)

Older people living in care homes, particularly those with dementia and similar conditions, are less likely to be involved in research than other populations despite often having the highest and most complex care needs. This is primarily due to the complex ethical and practical issues surrounding the inclusion of people unable to provide informed consent, which affects about 70% of care home residents. It is also because care homes are less ‘research active’ than other care settings.

The current lack of research involving care home residents results in a poorer evidence-base for their care. The impact of COVID-19 on care home residents has highlighted the stark inequalities experienced by groups who are least likely to be involved in research.

Care home residents are increasingly being encouraged to have advance care planning discussions about their care preferences. These could be extended to include discussions about research participation, although these more complex conversations may benefit from interventions to support and facilitate discussion.

Effectively engaging care home residents in discussions about their views towards research may enable those who care for them to support their decision-making about involvement. It also provides an opportunity for their families and carers to represent their wishes and preferences in the event that they are unable to make their own decisions about participation in the future. 

This mixed-methods PhD project aims to explore how care home residents and their carers can be better engaged in research, and the barriers and facilitators to their inclusion. Using established intervention development methods, an intervention will be developed to support conversations about research with care home residents and facilitate advance planning for research participation.

The findings will support opportunities for care home residents to participate in research, have their voices heard, and receive quality evidence-based care in the future.