背景:自杀研究和预防已经认识到有自杀经历的人参与的重要性和价值。尽管如此,缺乏关于研究合作和联合生产的明确指导。这项研究旨在通过制定一套指南来解决这一差距,该指南将有自杀经历的人积极参与自杀研究。,即,与有生活经验的人进行研究,而不是去,或为他们。
方法:使用Delphi方法来确定关于自杀研究中具有自杀经历的人积极参与的最佳实践的陈述。通过对科学和灰色文献的系统搜索,并回顾作者最近进行的相关研究的定性数据。两个专家小组:有自杀经历的人(n=44)和自杀研究人员(n=29)在三轮在线调查中对陈述进行了评级。准则中包括每个小组至少80%的小组成员认可的声明。
结果:小组成员在17个章节的126个陈述中认可了96个陈述,涵盖了从决定研究问题和获得资金的整个研究周期,进行研究,传播和实施成果。总的来说,两个小组在研究机构的支持方面达成了实质性的共识,合作和联合制作,沟通和共同决策,进行研究,自我照顾,承认,以及传播和实施。然而,小组也不同意关于代表性和多样性的具体声明,管理期望,时间和预算,培训,和自我披露。
结论:这项研究确定了在自杀研究中,有自杀经历的人积极参与的共识建议,包括联合制作。研究机构和资助者的支持,以及为研究人员和有生活经验的人提供联合制作的培训,是成功实施和采纳准则所必需的。
The importance and value of involvement of people with lived experience of suicide has been recognized in suicide research and prevention. Nonetheless, clear guidance on research collaboration and co-production is lacking. This study aimed to address this gap by developing a set of
guidelines on active involvement of people with lived experience of suicide in suicide studies., i.e., conducting research with or by people with lived experience, rather than to, about or for them.
The Delphi method was used to determine statements on best practice for the active involvement of people with lived experience of suicide in suicide research. Statements were compiled through a systematic search of the scientific and grey literature, and reviewing qualitative data from a recent related study conducted by the authors. Two expert panels: people with lived experience of suicide (n = 44) and suicide researchers (n = 29) rated statements over three rounds of an online survey. Statements endorsed by at least 80% of panellists of each panel were included in the
guidelines.
Panellists endorsed 96 out of 126 statements in 17 sections covering the full research cycle from deciding on the research question and securing funding, to conducting research and disseminating and implementing outcomes. Overall, there was a substantial level of agreement between the two panels regarding support from research institutions, collaboration and co-production, communication and shared decision making, conducting research, self-care, acknowledgment, and dissemination and implementation. However, panels also disagreed on specific statements regarding representativeness and diversity, managing expectations, time and budgeting, training, and self-disclosure.
This study identified
consensus recommendations on active involvement of people with lived experience of suicide in suicide research, including co-production. Support from research institutions and funders, and training on co-production for researchers and people with lived experience, are needed for successful implementation and uptake of the
guidelines.