Background 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. Methods 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. Results 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. Conclusions 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.
Background There is an increased interest to make the voices of frail older people heard in research by actively involving them in research processes. Involving frail older people in research could, however, be perceived as challenging by researchers. To actively involve frail older people in research processes in a meaningful way, the knowledge about their own views on what research is must be widened and deepened. Methods Individual interviews were conducted with 17 frail older men and women with former experience of participation in research studies. Qualitative data were analysed using content analysis. Results Frail older people’s views on what research means are described through the main category; An essentiality beyond one’s own competence, which describes research as a complex process that is important for society but difficult to understand. This is described in the sub-categories; A driving force for societal development, A benefit when based on lived experience, A source of knowledge difficult to access and understand, and A respected job filled with responsibilities. Conclusion Different views on research from the perspective of frail older people show that research is viewed as a complex yet important phenomenon to frail older people. Research was also seen as a natural part in society. Research was viewed as difficult to access and understand. Thus, researchers must train themselves to communicate research findings to the public in an understandable way. To create common understandings through information and education, researchers might be better placed to involve frail older people in a meaningful way and thereby also have the possibility to develop good working practice and relationships with those involved.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
hi@scite.ai
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.