Engaging care home residents in research: identification of barriers and facilitators to inclusion and the development of a communication support intervention (The ENGAGE study)

Nocivelli, Brittany 2025. Engaging care home residents in research: identification of barriers and facilitators to inclusion and the development of a communication support intervention (The ENGAGE study). PhD Thesis, Cardiff University. Item availability restricted.

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Abstract

Care home residents are an underrepresented population in research, despite often experiencing poorer health and having the most complex care needs. As a result of this underrepresentation, relevant research evidence may not be generalisable to those who require it the most. This mixed-methods doctoral thesis explores how care home residents can be better engaged in research. Patient and Public Involvement (PPI) was integral to the project and considered throughout each stage. Through a scoping review, barriers and facilitators to the inclusion of care home residents were identified which included both practical and ethical factors at different system levels. Recommendations for researchers about overcoming the challenges of including care home residents in research were developed as an output from this review. Informed by scoping review findings, a survey and interview study were conducted. These explored stakeholders’ views about barriers and facilitators to care home residents’ inclusion in research, their views about encouraging early discussions about residents’ preferences about research participation and the facilitation of advance planning for research. The findings suggested that poor communication between stakeholders has a large impact on the sharing of research opportunities and residents’ being able to effectively share their preferences about their own research participation. By facilitating opportunities for care home residents to share their views and wishes about research it may be possible to improve inclusion. Using established intervention development methods, an intervention was adapted and developed to support and facilitate early discussions about research participation preferences with care home residents. The findings will support opportunities for care home residents to participate in research, have their voices heard, and receive better quality evidence-based care in the future.

Item Type:	Thesis (PhD)
Date Type:	Completion
Status:	Unpublished
Schools:	Schools > Medicine
Date of First Compliant Deposit:	21 May 2025
Last Modified:	21 May 2025 09:09
URI:	https://orca.cardiff.ac.uk/id/eprint/178338

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