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首页> 美国卫生研究院文献>Research Involvement and Engagement >Patient involvement in the development of a psychosocial cancer rehabilitation intervention: evaluation of a shared working group with patients and researchers
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Patient involvement in the development of a psychosocial cancer rehabilitation intervention: evaluation of a shared working group with patients and researchers

机译：患者参与社会心理癌症康复干预措施的开发：与患者和研究人员共同工作组的评估

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Plain English summaryThe aim of this paper is to present our experiences from a shared working group (SWG) with patient representatives and researchers. The SWG collaborated on developing a psychosocial cancer rehabilitation intervention for women treated for breast cancer and men treated for prostate cancer and on the planning of an effect study of this intervention.The SWG included five patient representatives (three women treated for breast cancer and two men treated for prostate cancer), four researchers and a research assistant. The SWG met four times during the year where the intervention was developed. Data material for the present evaluation study comprises meeting documents, transcriptions of interviews with two patient representatives and three researchers from the SWG, and the primary investigator’s field notes.The collaboration between patient representatives and researchers informed both the intervention and the research planning and was rewarding for the involved participants. The well-structured organization of the collaboration had a positive impact on the outcome. In addition, clear goals and clarification of expectations were important. Challenges were encountered in keeping continuity between meetings and carrying out homework as intended. It was crucial for the collaboration that patient representatives had specific knowledge, interest and motivation for the project.Involving patient representatives in the research process heightened the relevancy of the research and the quality of its contents. The SWG gave patient representatives and researchers a better mutual understanding. Overall, the conclusion is that the benefits obtained by involving patient representatives exceeds the additional costs this involves.
机译：简单的英语摘要本文的目的是向患者代表和研究人员介绍我们在一个共享工作组（SWG）中的经验。 SWG合作开发了针对乳腺癌女性和男性前列腺癌的心理社会癌症康复干预措施，并规划了该干预措施的效果研究.SWG包括五名患者代表（三名接受乳腺癌治疗的女性代表和两名男性代表）治疗前列腺癌），四名研究人员和一名研究助理。在制定干预措施的这一年中，SWG召开了四次会议。本评估研究的数据材料包括会议文件，来自SWG的两名患者代表和三名研究人员的访谈记录以及主要研究者的现场记录，患者代表与研究人员之间的合作为干预和研究计划提供了依据，并收获颇丰为参与的参与者。良好组织的合作组织对成果产生了积极影响。此外，明确目标和澄清期望也很重要。在保持会议之间的连续性和按计划进行作业方面遇到了挑战。患者代表对项目具有特定的知识，兴趣和动力对合作至关重要。患者参与研究过程提高了研究的相关性及其内容的质量。 SWG使患者代表和研究人员之间有了更好的相互了解。总的来说，结论是，让患者代表参与所获得的收益超过了所涉及的额外费用。

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