Background: Family carers play a central role in supporting people at the end of life, 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 to help ensure the findings made sense and were communicated meaningfully from the carers' perspective.
Aim: To present: (1) principles and components that facilitated successful patient and public involvement in an evidence synthesis project to help inform patient and public involvement in similar projects; (2) recommendations for carer support that were instigated and produced by the Review Advisory Panel.
Process and principles: Nine Review Advisory Panel meetings including four to five carers, a lay Chair and three researchers were held. Solid 'groundwork' was invested in recruitment and relationship-building prior to meetings, and it was ensured that there was agreement of how to work together and clarification of expectations at the first meeting. Key meeting principles were: having a majority of carers, and a Chair with both carer and patient and public involvement experience, to ensure carer voices remained at the fore substantial researcher representation, including the project lead, to highlight the value placed on Review Advisory Panel meetings flexibility to follow carers' agendas, enabling 'space to talk' and 'space to change' appropriate and prompt carer payment, again emphasising patient and public involvement value to the project. Added general principles were: ongoing training, ample funded time for Review Advisory Panel preparation and ongoing communication outside meetings. COVID moved all meetings online after the first meeting, but the principles were maintained.
Outputs: The project saw an evolution from patient and public involvement consultation to co-production. The main patient and public involvement output was recommendations for supporting carers based on project findings, instigated and produced by the Review Advisory Panel.
Reflection on successful components and challenges: Five carers (including the Chair) and six researchers responded to questions by e-mail. Analysis by one researcher, aided by two other researchers, was then reviewed by all participants and revised. Both carers and researchers felt the components that made the patient and public involvement work were: (1) a shared sense of purpose of and gains from the Review Advisory Panel; (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. Patient and public involvement representation on the wider Research Management Group proved less successful, flagging the importance of negotiating and defining patient and public involvement roles at all project levels.
Conclusion: The patient and public involvement 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 patient and public involvement funding models.
Study registration: This study is registered as PROSPERO registration 2019 CRD42019130279 at https://www.crd.york.ac.uk/prospero/.
Funding: This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (grant 18/01/01) and will be published in full in Health and Social Care Delivery Research. See the NIHR Journals Library website for further project information.
Keywords: CARERS; END-OF-LIFE; EVIDENCE SYNTHESIS; MENTAL HEALTH; PATIENT AND PUBLIC INVOLVEMENT; PSYCHOLOGICAL MORBIDITY.
Family carers are crucial in supporting people nearing the end of life, but their own mental health may often suffer as a consequence. This project summarised what is known about what makes carers’ mental health better or worse. Researchers worked with a carer Review Advisory Panel to ensure that project findings were understandable and useful to carers. To report key findings on what made the teamwork between researchers and carers successful; to help improve teamwork in other projects; and to present carers’ own recommendations on how to improve their mental health. Nine Review Advisory Panel meetings were held which included four to five carers, a lay Chair and three researchers. Important early preparation included getting to know each other and agreeing how to work together. Key meeting principles were: (1) bringing carer voices to the fore by having a majority of carers and an experienced carer as Chair; (2) highlighting the value placed on meetings by having several researchers attend, including the project lead; (3) flexibility to include carers’ own agenda and project changes; and (4) appropriate and prompt carer payment. Meetings had to adapt to online working due to COVID-19. Carers moved from being advisors to taking more initiative and producing their own carer recommendations, which became a main project output. Written reflections by carers and researchers indicated that successful teamwork arose from a shared sense of purpose and gains, mutual commitment and respect, and bridging between researcher and carer perspectives through training, communication, negotiation and compromise. Early preparation helped the group adapt to the challenges of online working. Carer representation on other project committees could have been improved. Project principles enabled good researcher–carer teamwork and produced valuable carer recommendations, but need proper investment in time and resources. Online working can be successful, but needs good face-to-face preparation.