Involvement of frail older people in research

Research project
Active research
Project owner
Institute of Neuroscience and Physiology

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 and the Gothenburg University Centre for Person-Centred Care, 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


(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).

(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:

(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:

(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:

(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:

(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:

(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.

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

Isak Berge, doctoral student

Roar Hermanssen Østby, doctoral student

David Edvardsson, researcher

Sara Hultqvist, researcher

Maria Haak, researcher

Emmelie Barenfeld, researcher

Synneve Dahlin-Ivanoff, researcher