使用 "患者参与研究量表"(PEIRS)评估患者和家庭合作伙伴参与痴呆症研究的批判性思考。

Frontiers in dementia Pub Date : 2024-06-24 eCollection Date: 2024-01-01 DOI:10.3389/frdem.2024.1422820
Joey Wong, Lillian Hung, Cates Bayabay, Karen Lok Yi Wong, Annette Berndt, Jim Mann, Lily Wong, Lynn Jackson, Mario Gregorio
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引用次数: 0

摘要

导言:有生活经历的人越来越多地参与研究。但很少有工具可用于评估他们参与研究的情况。患者参与研究量表 (PEIRS) 是为数不多的经过验证的工具之一。在一个为期两年的远程呈现机器人项目中,我们的团队每 6 个月对有痴呆症生活经历的患者和家庭伙伴使用 PEIRS。这篇反思论文报告了我们对主要学习成果的自我研究,并提出了使用 PEIRS 评估患者和家庭合作伙伴参与痴呆症研究的实用技巧。这是首次记录在痴呆症研究项目中多次使用 PEIRS 的案例:在 Rolfe 等人的反思模型指导下,我们进行了三次团队反思会议,以检查团队使用 PEIRS 改善和评估患者及家庭合作伙伴参与研究的经验。我们还回顾了研究日志中记录的会议记录和现场笔记。结果:研究小组确定了三条主要经验:使用 PEIRS 调查的价值、调整以及影响其作为评估工具实施的因素。使用 PEIRS 为项目带来了显著的益处,尽管一些患者和家庭合作伙伴认为这是一种负担。根据患者合作伙伴的建议,评估工具增加了表情符号和评论框。表情符号引入了趣味元素,而评论框则允许个性化回复。有几个因素影响了 PEIRS 工具的有效性:访谈者的身份、回复和跟踪的保密性、使用工具的时间和频率以及评估的呈现方式。根据这些经验,我们提出了六条实用建议--"参与":ENGAGE":愉快和有趣的过程、绝不强人所难、及早准备、适应团队需要、给人选择、参与和反思:随着将有生活经验的人纳入痴呆症研究的新兴趋势,有必要对患者和家庭伙伴以及研究团队的参与策略进行持续评估。未来的研究可以进一步探索调查的后勤工作、共同开发评估工具以及与痴呆症患者共同使用工具。
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A critical reflection on using the Patient Engagement In Research Scale (PEIRS) to evaluate patient and family partners' engagement in dementia research.

Introduction: Research involvement of people with lived experiences is increasing. Few tools are designed to evaluate their engagement in research. The Patient Engagement In Research Scale (PEIRS) is one of the few validated tools. Our team employed the PEIRS with patient and family partners with lived experiences of dementia every 6 months in a two-year telepresence robot project. This reflection paper reports our self-study on key learnings and proposes practical tips on using the PEIRS to evaluate patient and family partners' engagement in dementia research. It is the first to document a case using the PEIRS multiple times in a dementia research project.

Methods: Guided by Rolfe et al.'s reflective model, we conducted three team reflective sessions to examine the team's experiences using the PEIRS to improve and evaluate patient and family partners' engagement in the research. We also reviewed our meeting notes and fieldnotes documented in the research journal. A reflexive thematic analysis was performed.

Results: The team identified three key learnings: the values of using the PEIRS survey, the adaptations, and the factors influencing its implementation as an evaluation tool. Using the PEIRS provided significant benefits to the project, although some patient and family partners felt it was burdensome. The evaluation tool was enhanced with emojis and comment boxes based on suggestions from patient partners. The emojis introduced an element of fun, while the comment boxes allowed for personalized responses. Several factors influenced the PEIRS tool's effectiveness: the interviewer's identity, the confidentiality of responses and follow-ups, the timing and frequency of using the tool, and the presentation of the evaluations. These learnings led to the development of six practical tips,-"ENGAGE": Enjoyable and fun process, Never impose, Get prepared early, Adapt to the team's needs, Give people options, and Engage and reflect.

Conclusion: With the emerging trend of including people with lived experiences in dementia research, there is a need for ongoing assessment of engagement from both patient and family partners and the research team strategies. Future research can further explore survey logistics, co-development of evaluation tools, and the use of tools with people living with dementia.

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