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首页> 外文期刊>BMC Palliative Care >Developing research priorities for palliative care of people with intellectual disabilities in Europe: a consultation process using nominal group technique
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Developing research priorities for palliative care of people with intellectual disabilities in Europe: a consultation process using nominal group technique

机译：为欧洲的智障人士提供姑息治疗的研究重点：使用名义群体技术的咨询过程

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Background Empirical knowledge around palliative care provision and needs of people with intellectual disabilities is extremely limited, as is the availability of research resources, including expertise and funding. This paper describes a consultation process that sought to develop an agenda for research priorities for palliative care of people with intellectual disabilities in Europe. Methods A two-day workshop was convened, attended by 16 academics and clinicians in the field of palliative care and intellectual disability from six European countries. The first day consisted of round-table presentations and discussions about the current state of the art, research challenges and knowledge gaps. The second day was focused on developing consensus research priorities with 12 of the workshop participants using nominal group technique, a structured method which involved generating a list of research priorities and ranking them in order of importance. Results A total of 40 research priorities were proposed and collapsed into eleven research themes. The four most important research themes were: investigating issues around end of life decision making; mapping the scale and scope of the issue; investigating the quality of palliative care for people with intellectual disabilities, including the challenges in achieving best practice; and developing outcome measures and instruments for palliative care of people with intellectual disabilities. Conclusions The proposal of four major priority areas and a range of minor themes for future research in intellectual disability, death, dying and palliative care will help researchers to focus limited resources and research expertise on areas where it is most needed and support the building of collaborations. The next steps are to cross-validate these research priorities with people with intellectual disabilities, carers, clinicians, researchers and other stakeholders across Europe; to validate them with local and national policy makers to determine how they could best be incorporated in policy and programmes; and to translate them into actual research studies by setting up European collaborations for specific studies that require such collaboration, develop research proposals and attract research funding.
机译：背景技术有关提供姑息治疗和智障人士需求的经验知识极为有限，研究资源（包括专业知识和资金）的可获得性也极为有限。本文介绍了一个协商过程，该过程旨在为欧洲智障人士的姑息治疗制定优先研究议程。方法召开了为期两天的研讨会，来自六个欧洲国家的姑息治疗和智力残疾领域的16名学者和临床医生参加了该研讨会。第一天包括圆桌会议介绍和有关当前技术水平，研究挑战和知识差距的讨论。第二天的重点是使用名义小组技术与12名与会人员达成共识研究重点，这是一种结构化方法，涉及生成研究重点列表并按重要性顺序对其进行排名。结果共提出40项研究重点，并分解为11个研究主题。四个最重要的研究主题是：调查寿命终止决策周围的问题;绘制问题的规模和范围;调查智障人士的姑息治疗质量，包括在实现最佳实践中所面临的挑战;以及开发用于对智障者进行姑息治疗的成果指标和工具。结论提出四个主要优先领域的建议以及一系列有关智力障碍，死亡，死亡和姑息治疗的未来研究的次要主题将有助于研究人员将有限的资源和研究专长集中在最需要的领域上，并支持建立合作关系。下一步是与欧洲的智障人士，护理人员，临床医生，研究人员和其他利益相关者交叉验证这些研究重点;与地方和国家决策者进行验证，以确定如何将它们最好地纳入政策和计划;并通过建立针对特定研究的欧洲合作来将其转化为实际研究，这些合作需要特定的研究，制定研究计划并吸引研究资金。

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