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

Berge, Isak LU ; Barenfeld, Emmelie ; Dahlin-Ivanoff, Synneve LU ; Haak, Maria LU and Lood, Qarin (2020) In BMC Geriatrics 20(1).
Abstract

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... (More)

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.

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author
; ; ; and
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Ageing, Frailty, Grounded theory, Patient and public involvement, Person centred, Research participation, User involvement
in
BMC Geriatrics
volume
20
issue
1
article number
410
publisher
BioMed Central (BMC)
external identifiers
  • pmid:33069211
  • scopus:85092699221
ISSN
1471-2318
DOI
10.1186/s12877-020-01817-z
project
UserAge: Understanding User Participation in Research on Ageing and Health
language
English
LU publication?
yes
id
23122d57-7e40-40c1-b40d-42af057418ab
date added to LUP
2020-11-05 08:56:17
date last changed
2024-06-14 01:54:18
@article{23122d57-7e40-40c1-b40d-42af057418ab,
  abstract     = {{<p>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.</p>}},
  author       = {{Berge, Isak and Barenfeld, Emmelie and Dahlin-Ivanoff, Synneve and Haak, Maria and Lood, Qarin}},
  issn         = {{1471-2318}},
  keywords     = {{Ageing; Frailty; Grounded theory; Patient and public involvement; Person centred; Research participation; User involvement}},
  language     = {{eng}},
  number       = {{1}},
  publisher    = {{BioMed Central (BMC)}},
  series       = {{BMC Geriatrics}},
  title        = {{Challenging oneself on the threshold to the world of research – frail older people’s experiences of involvement in research}},
  url          = {{http://dx.doi.org/10.1186/s12877-020-01817-z}},
  doi          = {{10.1186/s12877-020-01817-z}},
  volume       = {{20}},
  year         = {{2020}},
}