Involving burn survivors in agenda setting on burn research: An added value?
Involving burn survivors in agenda setting on burn research: An added value?
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DOI：
10.1016/j.burns.2009.04.004
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发表时间：
2010-03-01
期刊：
影响因子：
2.7
通讯作者：
de Haan, Monique J. M.
中科院分区：
文献类型：
--
作者：
Broerse, Jacqueline E. W.;Zweekhorst, Marjolein B. M.;de Haan, Monique J. M.
背景与目的：烧伤幸存者在烧伤研究中的作用通常仅限于研究对象和研究结果的受益者，而研究决策传统上是一小部分专家（主要是科学家）的领域。在本文中，我们比较了烧伤幸存者和专业人员的研究重点，并调查了在多大程度上可能达成联合研究议程。研究方法：本项目采用对话模式设置研究议程。最初分别咨询烧伤幸存者和专业人员，并通过文献调查、探索性访谈（n = 10）、焦点小组（n = 58）、问卷调查（n = 224）和德尔菲轮询（n = 12）建立特定群体的研究重点列表。随后，在一次对话会议上，烧伤幸存者和专业人士提出并讨论了他们的优先事项，制定了一份综合清单，并在该清单上列出了15个最重要的主题。结果：烧伤幸存者和专业人员的研究重点之间存在相当大的重叠，特别是在伤口愈合和疤痕管理的生物医学和临床研究方面。然而，也观察到差异，例如疤痕和供体部位的瘙痒和水肿的治疗。结论：该模型在引出专业人员和烧伤幸存者的研究重点方面被证明是有用的，并在这些群体之间激发了有意义的对话。烧伤幸存者的参与确定了目前在荷兰不是研究重点的烧伤研究领域。(C) 2009爱思唯尔有限公司和ISBI。版权所有。
Background and aim: The role of burn survivors in burn research is usually restricted to being objects of study and beneficiaries of research results, while decision-making on research is traditionally the domain of a small group of experts, mainly scientists. In this article we compare the research priorities of burn survivors and professionals and investigate to what extent it is possible to come to a joint research agenda.Methodology: The project followed the Dialogue Model for research agenda setting. Initially burn survivors and professionals were consulted separately and group-specific lists of research priorities were established, using a literature survey, exploratory interviews (n = 10), focus groups (n = 58), a questionnaire (n = 224) and Delphi rounds (n = 12). Subsequently, in a dialogue meeting burn survivors and professionals presented and discussed their priorities, developed one integrated list, and prioritized the 15 most important topics on this list.Results: Considerable overlap was observed between the research priorities of burn survivors and professionals, particularly with respect to biomedical and clinical research on wound healing and scar management. However, differences were also observed, e.g. treatment of itching and oedema on scars and donor places.Conclusion: The model proved useful in eliciting research priorities from both professionals and burn survivors, and in stimulating a meaningful dialogue between these groups. The involvement of burn survivors identified burn research areas that are currently not the focus of research in The Netherlands. (C) 2009 Elsevier Ltd and ISBI. All rights reserved.