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

Gunn Grande, Kerin Bayliss, Tracey Shield, Jackie Flynn, Christine Rowland, Danielle Harris, Alison Wearden, Morag Farquhar, Maria Panagioti, Alexander Hodkinson, Margaret Booth, David Cotterill, Lesley Goodburn, Cedric Knipe, Penny Bee
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引用次数: 0

Abstract

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.

让护理顾问参与证据综合,以改善临终家庭护理期间护理人员的心理健康:新冠肺炎远程工作期间的共同生产。
背景:家庭护理人员在临终时为人们提供支持方面发挥着核心作用,但往往会因此对他们自己的心理健康产生不利影响。该项目对可能影响护理人员心理健康的因素进行了证据综合研究,以帮助确定维持他们心理健康的方法。它与护理人员审查咨询小组密切合作,以帮助确保调查结果有意义,并从护理人员的角度进行有意义的沟通。目的:提出:(1)促进患者和公众成功参与证据综合项目的原则和组成部分,以帮助患者和公众参与类似项目;(2) 审查咨询小组提出的关于护理人员支助的建议。过程和原则:举行了九次审查咨询小组会议,包括四至五名护理人员、一名非专业主席和三名研究人员。在会议之前,在招聘和关系建设方面投入了坚实的“基础”,并确保在第一次会议上就如何合作达成一致并澄清期望。主要会议原则是:拥有大多数护理人员,以及一位具有护理人员、患者和公众参与经验的主席,以确保护理人员的声音始终处于重要地位——包括项目负责人在内的大量研究人员代表,以强调审查咨询小组会议的价值——灵活遵循护理人员议程,使“谈话的空间”和“改变的空间”能够适当而及时地支付护理人员的费用,再次强调患者和公众参与对项目的价值。增加的一般原则是:持续的培训、充足的资金用于审查咨询小组的筹备以及持续的外部会议沟通。新冠肺炎在第一次会议后将所有会议都转移到了网上,但原则得到了维护。产出:该项目经历了从患者和公众参与咨询到联合制作的演变。主要的患者和公众参与产出是根据项目调查结果,由审查咨询小组发起和提出的支持护理人员的建议。反思成功的组成部分和挑战:五名护理人员(包括主席)和六名研究人员通过电子邮件回答了问题。由一名研究人员在另外两名研究人员的协助下进行的分析,随后由所有参与者进行审查和修订。护理人员和研究人员都认为,使患者和公众参与发挥作用的组成部分是:(1)审查咨询小组的共同目标感和收益;(2) 个人利益;(3) 相互承诺和尊重;以及(4)通过对培训的投资,确保护理人员能够发表有意义的评论,以及持续的谈判和妥协,在学术和非专业观点之间架起桥梁。挑战在于,新冠疫情导致的从面对面会议到在线会议的转变减少了非正式性、灵活性、个人联系和非语言交流。然而,早期的基础工作有助于团队应对这些挑战。事实证明,在更广泛的研究管理小组中,患者和公众参与的代表不太成功,这表明了在所有项目层面谈判和定义患者和公众参与者角色的重要性。结论:所采用的患者和公众参与原则,包括会议组成和主持,以及遵循护理人员议程的灵活性,似乎有助于从咨询到共同制定护理人员建议,但需要进一步测试。应进一步调查远程工作成功的先决条件,因为面对面会议和虚拟会议的不同优势可以通过混合工作结合起来。真正的合作制作所需的迭代和响应性工作可能需要更灵活的患者和公众参与资金模式。研究注册:本研究注册为PROSPERO注册2019 CRD42019130279https://www.crd.york.ac.uk/prospero/.Funding:该项目由国家卫生与护理研究所(NIHR)卫生与社会护理提供研究计划资助(拨款18/01/01),并将在《卫生与社会保健提供研究》上全文发表。有关更多项目信息,请访问NIHR期刊图书馆网站。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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