PDF(Pubmed)
Abstract：
BACKGROUND: As patient and public involvement (PPI) in research has become increasingly common, research-based recommendations on its principles and impacts have been established. The specifics of conducting PPI are likely to differ when involving different groups. Family/informal carers for those with health conditions or disabilities have a lot to contribute to research, but instances of their involvement have yet to be reviewed.
OBJECTIVE: To systematically review and synthesize studies where family/informal carers have been involved in the research process, to develop an understanding of the benefits, barriers and facilitating factors.
METHODS: A search of five electronic databases was conducted using a combination of terms relating to carers, involvement and research. A grey literature search, expert consultation and hand-searching were also used. Following screening, data extraction and quality assessment, a narrative synthesis incorporating thematic analysis was conducted.
RESULTS: A total of 55 studies met the inclusion criteria, with diverse design and participatory approaches. Four themes were identified, relating to the outcomes, challenges, and practicalities of involving carers: (re) building relationships with carers; carers as equals not afterthoughts; carers have unique experiences; carers create change. Full involvement throughout the research was not always possible, due to barriers from the research world and responsibilities of the caring role. The literature demonstrated ways for carers to contribute in ways that suited them, maximizing their impact, while attending to relationships and power imbalances.
CONCLUSIONS: By summarizing the reported instances of carer involvement in research, this review brings together different examples of how successful research partnerships can be built with carers, despite various challenges. Carers are a heterogeneous group, and participatory approaches should be tailored to specific situations. Wider understanding of the challenges of conducting empowering research with carers, and the resources required to address these, are needed.
UNASSIGNED: The initial findings and themes were presented to a group of carers who had been involved in research and whose reflections informed the final synthesis.
OBJECTIVE: To systematically review and synthesize studies where family/informal carers have been involved in the research process, to develop an understanding of the benefits, barriers and facilitating factors.
METHODS: A search of five electronic databases was conducted using a combination of terms relating to carers, involvement and research. A grey literature search, expert consultation and hand-searching were also used. Following screening, data extraction and quality assessment, a narrative synthesis incorporating thematic analysis was conducted.
RESULTS: A total of 55 studies met the inclusion criteria, with diverse design and participatory approaches. Four themes were identified, relating to the outcomes, challenges, and practicalities of involving carers: (re) building relationships with carers; carers as equals not afterthoughts; carers have unique experiences; carers create change. Full involvement throughout the research was not always possible, due to barriers from the research world and responsibilities of the caring role. The literature demonstrated ways for carers to contribute in ways that suited them, maximizing their impact, while attending to relationships and power imbalances.
CONCLUSIONS: By summarizing the reported instances of carer involvement in research, this review brings together different examples of how successful research partnerships can be built with carers, despite various challenges. Carers are a heterogeneous group, and participatory approaches should be tailored to specific situations. Wider understanding of the challenges of conducting empowering research with carers, and the resources required to address these, are needed.
UNASSIGNED: The initial findings and themes were presented to a group of carers who had been involved in research and whose reflections informed the final synthesis.
摘要：
背景：随着患者和公众参与研究（PPI）变得越来越普遍，关于其原则和影响的基于研究的建议已经建立。当涉及不同的群体时，进行PPI的细节可能会有所不同。有健康状况或残疾的家庭/非正式照顾者可以为研究做出很多贡献，但是他们参与的例子还有待审查。
目的：系统回顾和综合家庭/非正式照顾者参与研究过程的研究，为了了解好处，障碍和促进因素。
方法：使用与照顾者相关的术语组合对五个电子数据库进行搜索，参与和研究。灰色文献搜索，还使用了专家咨询和手工搜索。筛选后,数据提取和质量评估，进行了结合主题分析的叙事综合。
结果：共有55项研究符合纳入标准，具有多样化的设计和参与式方法。确定了四个主题，关于结果，挑战,涉及照顾者的实用性：（重新）与照顾者建立关系；照顾者平等而不是事后的想法；照顾者有独特的经历；照顾者创造变化。在整个研究中充分参与并不总是可能的，由于来自研究界的障碍和关怀角色的责任。文献展示了照顾者以适合他们的方式做出贡献的方式，最大化他们的影响，同时关注关系和权力失衡。
结论：通过总结护理者参与研究的报告实例，这篇评论汇集了不同的例子，说明如何与照顾者建立成功的研究伙伴关系，尽管面临各种挑战。照顾者是一个异质的群体，参与式方法应适合具体情况。更广泛地了解与照顾者进行授权研究的挑战，以及解决这些问题所需的资源，是需要的。
■最初的发现和主题已提交给参与研究的一组护理人员，他们的思考为最终的综合提供了信息。
目的：系统回顾和综合家庭/非正式照顾者参与研究过程的研究，为了了解好处，障碍和促进因素。
方法：使用与照顾者相关的术语组合对五个电子数据库进行搜索，参与和研究。灰色文献搜索，还使用了专家咨询和手工搜索。筛选后,数据提取和质量评估，进行了结合主题分析的叙事综合。
结果：共有55项研究符合纳入标准，具有多样化的设计和参与式方法。确定了四个主题，关于结果，挑战,涉及照顾者的实用性：（重新）与照顾者建立关系；照顾者平等而不是事后的想法；照顾者有独特的经历；照顾者创造变化。在整个研究中充分参与并不总是可能的，由于来自研究界的障碍和关怀角色的责任。文献展示了照顾者以适合他们的方式做出贡献的方式，最大化他们的影响，同时关注关系和权力失衡。
结论：通过总结护理者参与研究的报告实例，这篇评论汇集了不同的例子，说明如何与照顾者建立成功的研究伙伴关系，尽管面临各种挑战。照顾者是一个异质的群体，参与式方法应适合具体情况。更广泛地了解与照顾者进行授权研究的挑战，以及解决这些问题所需的资源，是需要的。
■最初的发现和主题已提交给参与研究的一组护理人员，他们的思考为最终的综合提供了信息。
