Department of Health and Rehabilitation, Institute of Neuroscience and Physiology, Sahlgrenska Academy, Centre for Ageing and Health - AgeCap, University of Gothenburg, Gothenburg, Sweden.
Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
BMC Geriatr. 2020 Oct 17;20(1):410. doi: 10.1186/s12877-020-01817-z.
User involvement of people outside academia in research is argued to increase relevance of research for society and to empower the involved lay persons. Frail older people can be a hard to reach group for research and thus an underrepresented group in research. There is a lack of knowledge how collaboration with frail older people should be best performed. Therefore, the aim of this study was to explore frail older people's experiences of involvement in research.
In this study we have invited people, 75 years of age or older screened as physically frail and who have previously participated in a study as data sources, to share their experiences by intensive interviewing. Data was collected and analysed in parallel inspired by a constructivist grounded theory approach.
The results demonstrate how frail older people have different incentives, how their context of ageing and the unusual position of being involved in research altogether influenced how, where and in what way they wished to be involved in research. This is described in three categories: Contributing to making a difference for oneself and others, Living a frail existence and Being on somebody else's turf. The categories compose the core category, Challenging oneself on the threshold to the world of research, which symbolises the perceived distance between the frail older people themselves and the research world, but also the challenges the frail older people could go through when choosing to be involved in research.
Frail older people have a varied capacity to participate in research, but in what way and how is difficult to know before they have been involved in the process of research. Our results advocate that it is problematic to exclude frail older people a priori and that there is a potential for new perspectives and knowledge to be shaped in the encounter and in the relationship between the researcher and the frail older person. For research to be able to cater for frail older people's needs of health services, their voices need to be heard and taken into consideration.
人们认为，让学术界以外的人参与研究可以提高研究对社会的相关性，并赋予参与的非专业人士权力。体弱的老年人是难以接触到的研究对象，因此他们在研究中代表性不足。目前，人们对于如何与体弱的老年人合作开展研究知之甚少。因此，本研究旨在探讨体弱老年人参与研究的体验。
在这项研究中，我们邀请了年龄在 75 岁或以上、被筛选为身体虚弱且之前曾作为数据来源参与过一项研究的人，通过深入访谈分享他们的经验。数据的收集和分析是并行进行的，灵感来自建构主义扎根理论方法。
研究结果表明，体弱老年人有不同的参与动机，他们的老龄化背景以及参与研究的特殊地位如何影响他们希望以何种方式、在何处以及以何种方式参与研究。这在三个类别中进行了描述：为自己和他人的改变做出贡献、过着虚弱的生活以及处于他人的领域。这三个类别构成了核心类别，即“在研究世界的门槛上挑战自我”，它象征着体弱老年人自身与研究世界之间的距离，也象征着体弱老年人在选择参与研究时可能经历的挑战。
体弱老年人参与研究的能力各不相同，但在他们参与研究过程之前，很难知道他们以何种方式和程度参与研究。我们的研究结果表明，先验地将体弱老年人排除在外是有问题的，在研究人员和体弱老年人之间的相遇和关系中，有可能形成新的观点和知识。为了使研究能够满足体弱老年人对卫生服务的需求，需要倾听和考虑他们的声音。
