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Challenging oneself on the threshold to the world of research – frail older people’s experiences of involvement in research

journal contribution
posted on 02.12.2020, 02:04 by I Berge, E Barenfeld, S Dahlin-Ivanoff, M Haak, Qarin LoodQarin Lood
© 2020, The Author(s). 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.

Funding

This study was conducted within the UserAge Programme funded by the Swedish Research Council for Health, Working Life and Welfare (Forte, 2016-07090 and 2018-00904) and the Hjalmar Svensson foundation. The funding bodies were not involved in the design of the study, the collection, analysis and interpretation of the data, nor in writing the manuscript. Open Access funding provided by Gothenburg University Library.

History

Publication Date

01/12/2020

Journal

BMC Geriatrics

Volume

20

Issue

1

Article Number

410

Pagination

10p.

Publisher

BioMed Central Ltd

ISSN

1471-2318

Rights Statement

The Author reserves all moral rights over the deposited text and must be credited if any re-use occurs. Documents deposited in OPAL are the Open Access versions of outputs published elsewhere. Changes resulting from the publishing process may therefore not be reflected in this document. The final published version may be obtained via the publisher’s DOI. Please note that additional copyright and access restrictions may apply to the published version.