Involvement of frail older people in research
Short description
The aims of this project are: 1) to explore facilitators and barriers for involving older people living with frailty in health and social care research, and 2) to investigate how barriers can be overcome to co-create structures for person-centred care with this group. The project comprises six studies that involves frail older people, health and social care staff, and researchers in ageing and health. The long-term goal with the project is to support the transition towards person-centred health and social care through the development of a structure for how frail older people can be involved in research in a way they experience as both meaningful and relevant. In the project we use individual interviews, focus groups and photo elicitation interviews to co-create guidelines for involvement of frail older people in research.
Overarching goal
The project is multidisciplinary and affiliated to the Centre for Aging and Health, AgeCap https://www.gu.se/en/agecap and the Gothenburg University Centre for Person-Centred Care, GPCC https://www.gu.se/en/gpcc.
The overarching goal is to contribute to GPCC’s research areas:
- Enabling transition to person-centred health and social care
- Development of partnerships between patient representatives / the general public and healthcare organizations
Publications
(1) Understanding User Involvement in Research in Aging and Health.
Iwarsson, S., Edberg, A.-K., Ivanoff, S. D., Hanson, E., Jönson, H., & Schmidt, S. (2019).
Gerontology and Geriatric Medicine.
(2) The Gothenburg H70 Birth cohort study 2014–16: design, methods and study population.
Rydberg Sterner, T., Ahlner, F., Blennow, K. et al.
Eur J Epidemiol 34, 191–209 (2019). https://doi.org/10.1007/s10654-018-0459-8
(3) Was it worth it? Older adults' experiences of participating in a population-based cohort study - a focus group study.
Dahlin-Ivanoff S, Rydberg Sterner T, Blennow K, Skoog I, Falk Erhag H.
BMC Geriatr. 2019 Aug 19;19(1):224. doi: 10.1186/s12877-019-1238-4.
(4) Uncovering hidden abilities for participation in research through photo-elicitation interviews: a view on participatory research with people living in residential care facilities.
Lood Q, Hermansen Østby R, Hultqvist S, Edvardsson D, Dahlin-Ivanoff S.
Research Involvement and Engagement, 2023;9:9 Doi: https://doi.org/10.1186/s40900-023-00422-9
(5)A real eye-opener: Nursing home staff experiences of co-designing nursing home services together with residents.
Berge I, Dahlin-Ivanoff, S, Barenfed E, Haak M, Lood Q.
Journal of Aging Studies, 2022;62:101059. Doi: https://doi.org/10.1016/j.jaging.2022.1010
(6) Research as an essentiality beyond one’s own competence: an interview study on frail older people’s view of research.
Haak M, Dahlin-Ivanoff S, Barenfeld E, Berge I Lood Q.
Research Involvement and Engagement, 2021;7:91. Doi: https://doi.org/10.1186/s40900-021-00333-7
(7) Everyday life in a Swedish nursing home during the COVID-19 pandemic: a qualitative interview study with persons 85 to 100 years.
Lood Q, Haak M, Dahlin-Ivanoff S.
BMJ Open, 2021;11:e048503. Doi: https://doi.org/10.1136/bmjopen-2020-048503
(8) Challenging oneself on the threshold to the world of research – Frail older people’s experiences of involvement in research.
Berge I, Barenfeld E, Dahlin-Ivanoff S, Haak, M, Lood Q.
BMC Geriatrics, 2020, 410:20. Doi: https://doi.org/10.1186/s12877-020-01817-z
(9) Epistemic injustice – Examples from research with and for frail older people.
Lood Q, Frögren J, Dahlin-Ivanoff S.
In: Jönson, H. UserAge: Understanding user involvement in research on ageing and health. Research Reports in Social Work; Vol. 2023, Nr. 2.
(10) Research collaboration between researchers and persons outside academia.
In: Jönson, H. UserAge: Understanding user involvement in research on ageing and health.
Westergren A, Lautsen CE, Andersson S, Lood Q, Ålund S, Petersson P, Haak M.
Research Reports in Social Work; Vol. 2023, Nr. 2.
(11) Research collaboration with older people as a matter of scientific quality and ethics: a focus group study with researchers in ageing and health.
Dahlin-Ivanoff S, Berge I, Barenfeld E, Haak M, Lood Q.
Research Involvement and Engagement, 2024;10:6. https://doi.org/10.1186/s40900-024-00540-y
(12) Uncovering hidden abilities for participation in research through photo-elicitation interviews: a view on participatory research with people living in residential care facilities.
Lood Q, Hermansen Østby R, Hultqvist S, Edvardsson D, Dahlin-Ivanoff S.
Research Involvement and Engagement, 2023;9:9. Doi: https://doi.org/10.1186/s40900-023-00422-9
(13) A real eye-opener: Nursing home staff experiences of co-designing nursing home services together with residents.
Berge I, Dahlin-Ivanoff, S, Barenfeld E, Haak M, Lood Q.
Journal of Aging Studies, 2022;62:101059. Doi: https://doi.org/10.1016/j.jaging.2022.101059
Research partners
Lund University
Kristianstad University
Linnaeus University
La Trobe University
The University of Gothenburg Centre for Person-Centred Care (GPCC)
Centre for Aging and Health (AgeCap)
Research groups members
Emmelie Barenfeld, researcher
Isak Berge, doctoral student
Synneve Dahlin-Ivanoff, researcher
David Edvardsson, researcher
Maria Haak, researcher
Roar Hermanssen Østby, doctoral student
Sara Hultqvist, researcher
Jenna Najar, researcher
