Nguyen Linda, van Oort Bente, Davis Hanae, van der Meulen Eline, Dawe-McCord Claire, Franklin Anita, Gorter Jan Willem, Morris Christopher, Ketelaar Marjolijn
School of Rehabilitation Science, McMaster University, Hamilton, ON, Canada.
CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, ON, Canada.
Res Involv Engagem. 2022 Nov 17;8(1):62. doi: 10.1186/s40900-022-00400-7.
Involvement of young partners by experience in research is on the rise and becoming expected practice. However, literature on how to promote equitable and meaningful involvement of young people is scarce. The purpose of this paper is to describe and reflect on different approaches between researchers and young partners by experience based on six research projects conducted in Canada, Netherlands, and United Kingdom.
From six exemplar research projects, at least one researcher and one young partner by experience were asked to collaboratively (1) describe the project; (2) summarise the values and practicalities of the project; and (3) reflect on their partnership. Thematic analysis was applied to the findings from these reflective exercises, which included meeting summaries, recordings, and notes.
All projects shared similar values, including mutual respect between all team members. Young partners were offered a variety of opportunities and approaches to being involved, for example in recruiting participants, co-analysing or (co-)presenting results. Supports were provided to the teams in a variety of ways, including organizing accessible meetings and having dedicated facilitators. Regular and proactive communication was encouraged by using asynchronous modes of communication, establishing reference documents, and a personal approach by facilitators. Facilitators aimed to tailor the needs of all team members by continuously discussing their preferred roles in the project. While most projects did not offer formal research training, various learning and skill development opportunities were provided throughout, including presenting skills or advocacy training.
With this paper, we demonstrated the value of reflection, and we invite others to reflect on their partnerships and share their lessons learned. Our recommendations for involvement of young people in research are: (1) Remember that it is okay to not know what the partnership might look like and there is no single recipe of how to partner; (2) Take the time to invest in partnerships; (3) Provide ongoing opportunities to reflect on partnerships; (4) Consider how to balance the power dynamics; and (5) Consider how to incorporate diversity in the background of young partners in research.
有研究经验的年轻伙伴参与研究的情况日益增多,并逐渐成为一种预期的做法。然而,关于如何促进年轻人公平且有意义地参与研究的文献却很匮乏。本文旨在基于在加拿大、荷兰和英国开展的六个研究项目,描述并反思研究者与有研究经验的年轻伙伴之间的不同合作方式。
从六个典型研究项目中,邀请至少一名研究者和一名有研究经验的年轻伙伴共同(1)描述项目;(2)总结项目的价值和实际情况;(3)反思他们的合作关系。对这些反思活动的结果进行主题分析,这些结果包括会议总结、录音和笔记。
所有项目都有相似的价值观,包括所有团队成员之间的相互尊重。为年轻伙伴提供了各种参与机会和方式,例如招募参与者、共同分析或(共同)展示研究结果。通过多种方式为团队提供支持,包括组织方便参与的会议以及配备专门的协调人员。鼓励通过异步沟通方式、建立参考文档以及协调人员的个性化方式进行定期和积极的沟通。协调人员旨在通过不断讨论所有团队成员在项目中的偏好角色来满足他们的需求。虽然大多数项目没有提供正式的研究培训,但在整个过程中提供了各种学习和技能发展机会,包括展示技能或宣传培训。
通过本文,我们展示了反思的价值,并邀请其他人反思他们的合作关系并分享经验教训。我们对年轻人参与研究的建议是:(1)记住,不知道合作关系会是什么样子也没关系,而且没有单一的合作模式;(2)花时间投入到合作关系中;(3)提供持续反思合作关系的机会;(4)考虑如何平衡权力动态;(5)考虑如何在研究中纳入年轻伙伴背景的多样性。