Involving carer advisors in evidence synthesis to improve carers’ mental health during end-of-life home care: co-production during Covid-19 remote working

Background: Family carers play a central role in supporting people at the end-of-life (EOL), but often suffer detrimental impacts on their own mental health as a result. This project conducted evidence synthesis of research into factors that may affect carers’ mental health to help identify ways of maintaining their mental health. It worked closely with a carer Review Advisory Panel (RAP) to help ensure findings made sense and were communicated meaningfully from carers’ perspective.
Aim: To present (1) principles and components that facilitated successful Public Patient Involvement (PPI) in an evidence synthesis project to help inform PPI in similar projects; (2) recommendations for carer support that were instigated and produced by the RAP.
Process and principles
Nine RAP meetings including 4-5 carers, a lay chair and three researchers were held.
Solid ‘groundwork’ was invested in recruitment and relationship building prior to meetings, and agreement of how to work together and clarification of expectations at first meeting.
Key meeting principles were:
• having a majority of carers, and a Chair with both carer and PPI experience, to ensure carer voices remained at the fore
• substantial researcher representation, including the project lead, to highlight value placed on RAP meetings
• flexibility to follow carers’ agendas, enabling ‘space to talk’ and ‘space to change’; and,
• appropriate and prompt carer payment, again emphasising PPI value to project.
Added general principles were: ongoing training, ample funded time for RAP preparation, and ongoing communication outside meetings.
Covid moved all meetings after the first online, but principles were maintained.
Outputs
The project saw an evolution from PPI consultation to co-production. The main PPI output was recommendations for supporting carers based on project findings, instigated and produced by the RAP.
Reflection on successful components and challenges
Five carers (including the Chair) and six researchers responded to questions by email. Analysis by one researcher, aided by two other researchers, was then reviewed by all participants and revised.
Both carers and researchers felt components that made the PPI work were: (1) a shared sense of purpose of RAP and gains; (2) personal gains; (3) mutual commitment and respect; and (4) bridging between academic and lay perspectives, through investment in training, ensuring carers were able to meaningfully comment, and continuous negotiation and compromise.
Challenges were that the Covid-induced move from face-to-face to online meetings reduced informality, flexibility, personal connection and non-verbal communication. However, earlier groundwork facilitated group resilience to these challenges. PPI representation on the wider Research Management Group proved less successful, flagging the importance of negotiating and defining PPI roles at all project levels.
Conclusion
The PPI principles employed, including meeting composition and chairing, and flexibility to follow carers’ agendas, appeared to facilitate the evolution from consultation to co-production of carer recommendations, but require further testing. Preconditions for successful remote working should be further investigated as the different advantages of face-to-face and virtual meetings may be combined through hybrid working. The iterative and responsive working required for genuine co-production may require more flexible PPI funding models.