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

Grande G, Bayliss K, Shield T, Flynn J, Rowland C, Harris D, Wearden A, Farquhar M, Panagioti M, Hodkinson A, Booth M, Cotterill D, Goodburn L, Knipe C, Bee P
Record ID 32018005283
Authors' objectives: 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. 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.
Authors' results and conclusions: 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. 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.
Project Status: Completed
Year Published: 2023
URL for additional information: English
English language abstract: An English language summary is available
Publication Type: Full HTA
Country: England, United Kingdom
MeSH Terms
  • Caregivers
  • Stakeholder Participation
  • Family Support
  • Home Care Services
  • Mental Health
  • Terminal Care
  • Palliative Care
Organisation Name: NIHR Health Services and Delivery Research programme
Contact Address: NIHR Journals Library, National Institute for Health and Care Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK
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This is a bibliographic record of a published health technology assessment from a member of INAHTA or other HTA producer. No evaluation of the quality of this assessment has been made for the HTA database.