背景:参与式研究已成为一种在创造科学知识和促进社会变革时解锁观点的方法。通过与人们进行研究,参与性研究努力让个人的观点参与设计,导电,并传播研究。然而,很少有研究揭示了对所研究现象的理解是如何在不同的研究伙伴之间形成的,同时,不同的观点是如何结合的。嵌套在一项关于多发性硬化症(MS)衰老的总体参与性混合方法研究中,这项定性研究探讨了在大学研究人员之间的相遇中如何形成对MS衰老的理解,患有MS的老年人,和病人协会的雇员。
方法:该研究由三个研究伙伴在丹麦合作进行:一组患有MS的老年人,病人协会的雇员,和大学研究人员。关于在三年的研究过程中如何表示和塑造对MS老化的不同理解的数据是通过现场笔记生成的,会议纪要,焦点小组访谈,个人采访。通过专题网络分析对收集的数据进行了分析。
结果:该研究表明,在研究开始时,研究合作伙伴对MS衰老的不同理解是如何体现的。这些理解是在-和之前形成的,因此,在研究环境之外,从研究参与者的生活经历中汲取,专业背景,和组织文化或位于更大的社会叙事中。通过一个以参与的研究伙伴之间的自反性为中心的过程,对MS的年龄意味着什么的理解被塑造和重新塑造,并最终合并为对MS以后生活的更动态的理解,在那里不同的观点可以共存。
结论:研究结果表明,研究伙伴,包括患有MS的老年人和患者协会的员工,给研究带来了不同的理解。反身实践使这些观点共存,加强参与度和透明度,与MS一起培养对以后生活的动态理解这凸显了自反性在参与性研究中不断发展的复杂理解中的价值。
近年来,参与性研究越来越多地用于各种研究领域(例如,老龄化研究)的目标是吸引多样化的研究合作伙伴来利用他们的观点和贡献。这种方法旨在对所研究的现象形成更细致的理解,并确定对实践有用的见解。在不同的研究团队中工作也被发现是复杂的,人们对不同研究伙伴的看法如何塑造最终的研究产品知之甚少。根据与患者协会员工合作进行的一项研究,患有多发性硬化症(MS)的老年人,和大学的研究人员,本研究旨在揭示MS衰老的观点是如何代表和塑造参与式研究时期的。它发生在三年的时间里,数据是通过实地笔记收集的,会议纪要,焦点小组访谈,个人采访。研究结果强调了研究伙伴如何代表对所研究现象的不同理解,嵌入在他们的社会中,文化,和专业背景,这可能会影响他们对研究过程的期望和贡献。此外,该研究表明,参与关于期望和对所研究现象的理解的批判性对话可以提供对代表哪些感知的洞察力,使参与式研究过程更加透明。最后,该研究传达了这种批判性对话如何促进理解和观点在研究过程中演变为对所研究现象的潜在更动态的理解。
BACKGROUND: Participatory research has gained traction as an approach to unlock perspectives when creating scientific knowledge and to facilitate societal changes. By conducting research with people, participatory research strives to engage individuals\' perspectives in designing, conducting, and disseminating the research. Nevertheless, few studies have unpacked how understandings of the studied phenomenon are shaped among diverse research partners and, concurrently, how different perspectives are combined. Nested within an overall participatory mixed methods study on aging with multiple sclerosis (MS), this qualitative study explores how understandings of aging with MS are shaped in encounters between university researchers, older adults with MS, and employees in a patient association.
METHODS: The study was collaboratively conducted in Denmark by three research partners: a group of older adults with MS, employees in a patient association, and university researchers. Data on how different understandings of aging with MS were represented and shaped during the three-year research process was generated through field notes, meeting minutes, focus group interviews, and individual interviews. The collected data was analyzed through a thematic network analysis.
RESULTS: The study demonstrates how different understandings of aging with MS were represented among the research partners when the research was initiated. These understandings were shaped prior to -and, therefore, outside-the research setting, drawing from the research participants\' lived experiences, professional backgrounds, and organizational cultures or situated in larger societal narratives. Through a process centered on
reflexivity among the engaged research partners, the understandings of what it means to age with MS was shaped and re-shaped and eventually merged into a more dynamic understanding of later life with MS where different perspectives could co-exist.
CONCLUSIONS: The findings demonstrate that research partners, including older adults with MS and employees from a patient association, brought diverse understandings to the study. Reflexive practices enabled these perspectives to co-exist, enhancing engagement and transparency, and fostering a dynamic understanding of later life with MS. This highlights the value of
reflexivity in evolving complex understandings within participatory research.
In recent years, participatory research has been increasingly utilized in various research fields (e.g., aging research) with the ambition of engaging a diverse group of research partners to leverage their perspectives and contributions. This approach aims to form a more nuanced understanding of the studied phenomenon and to identify insights useful for practice However, working in diverse research teams have also been found to be complex, and it is poorly understood how the perceptions of the different research partners shape the final research product. Based on a study conducted in collaboration with employees in a patient association, older adults with multiple sclerosis (MS), and university researchers, the present study aims to unfold how perspectives of aging with MS are represented and shaped doing a participatory research period. It occurred over a three-year period where data was collected through field notes, meeting minutes, focus group interviews, and individual interviews. The findings highlight how research partners represent different understandings of the studied phenomenon, which is embedded in their social, cultural, and professional background and which potentially influence their expectations of and contributions to the research process. Furthermore, the study demonstrates how engaging in a critical dialogue about expectations and understanding of the studied phenomenon can provide insight into which perceptions are represented, making the participatory research process more transparent. Lastly, the study conveys how such critical dialogue facilitates understandings and perspectives evolving during the research process into a potentially more dynamic understanding of the studied phenomenon.