为什么将参与者作为合作伙伴很重要？

Longitudinal population-based cohort studies that assess health-related exposure outcomes can provide important knowledge about the needs of older adults, and arecritical to our understanding衰老过程。聆听研究参与者的声音is not new in ageing research. It is, however, important to distinguish between older adults as the subjects of research and older adults aspartners in the research process. While issues of engagement can be similar, the relationship is quite different – involving older adults in decisions about the research process is about a shift in power – it is about building partnership.

At present, we know relatively little about the priorities of older adults and the possible problems they experience when they participate in longitudinal population-based studies. Therefore,我们的研究aimed to explore older adults’ motives, understandings and experiences regarding participating in theGothenburg H70 Birth Cohort Studies(the H70 study) – multidisciplinary epidemiological studies examining representative birth cohorts of older populations in Gothenburg, Sweden, since 1971.

How did we perform the study?

来自H70研究的38岁的70岁参与者参加了九个专门小组讨论什么使他们同意参加研究及其健康检查和问题的经验，要求他们被要求填写的自我报告评估以及他们在研究之前，期间和之后收到的信息。

Yes, it was worth it!

The results showed that the H70 study was experienced on the one hand as intense, exhausting, and never-ending, and on the other hand as interesting, rewarding, challenging and beneficial – both for oneself and for others. Although the participants had critical opinions about the study as a whole, the results showed that they trusted the purpose of the study and the intentions of the researchers responsible for it. Research shows that相信is considered an essential prerequisite forinvolvement in health research.

什么是新的？

According to the focus groups, taking part in the H70 study was motivated by a perception that it would grant the participants access to thorough and systematic health examinations that they otherwise would not have access to due to their advanced age and seemingly ageist priorities in the Swedish healthcare system. If participation in research is a way to gain access to treatment, we must be concerned about thecontext in which decisions on research participation are made, as well as the consequences this will have for research participation.

参与者还对考试的控制有限，认为他们得到的信息不足，并且各种测试的目的很难理解。这导致参与者即使在参加研究时仍有未解决的问题。H70研究是一个复杂的环境，对参与者的能力构成了重大挑战understand and use health information.

一些问题也被认为是敏感且难以回答的。例如，参与者认为某些问题是年龄在内，刻板印象并根据年龄将某些特征归因于某些特征。其他问题被认为是对所有具有其他形式的性和性别角色的参与者的异构性和歧视性。但是，我们的结果还表明，如果参与者对与进行考试的人会面感到安全和自信，他们发现在回答敏感问题时很难开放和真实。

Practical implications

这项研究为我们提供了有关H70研究中未来的后续考试中必须考虑的许多问题的知识，以确保老年人纵向研究的质量。通过将老年人作为研究中的合作者，他们的自主性和自决可以提高，以及他们以自己的权威行动的能力。对于我们作为研究人员而言，有效地倾听老年人的经验和知识可能会导致创新的研究线，并提供洞察力，并确保解决的研究问题是将使老年人受益最大的研究问题。

为了在研究过程的各个阶段增加用户参与度，我们需要与训练有素的研究人员创建支持性的研究环境，这些研究人员可以访问所需的教育工具，以确保H70研究结果的质量。这还包括开发满足健康素养较低的老年人需求所需的工具。