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What motivates informal carers to be actively involved in research, and what obstacles to involvement do they perceive?
Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Swedish Family Care Competence Centre (SFCCC), Sweden.ORCID iD: 0000-0002-0808-0004
Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
Lund University, Sweden.
Lund University, Sweden.
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2021 (English)In: Research Involvement and Engagement, E-ISSN 2056-7529, Vol. 7, no 1, article id 80Article in journal (Refereed) Published
Abstract [en]

Background: Due to demographic changes and a strained public sector operating in many countries globally, informal care is increasing. Currently, at least 1.3 million adults in Sweden regularly provide help, support and/or care to a family member/significant other. With no sign of an imminent decrease in their caring activities, it is important that informal carers are considered as a key stakeholder group within research that affects them, e.g., the co-design of carer and/or dyadic support interventions. The objective of this descriptive, quantitative study was to investigate informal carers’ perceived motivations and obstacles to become involved in research.

Methods: A cross-sectional survey design was adopted, using first-wave data from a panel study. The data, collected in Sweden between September 2019 and March 2020, included survey responses from 147 informal carers who were either aged 60+ years themselves or were caring for someone who was aged 60+ years.

Results: Our main results showed that informal carers are, in general, interested in research. Slightly fewer were interested in becoming actively involved themselves, but older age was the only characteristic significantly associated with less interest of being actively involved. Two latent motivational dimensions emerged from the factor analysis: ‘family motivation’ and ‘the greater good motivation’. These, according to our results, almost equally valued dimensions, described the differing reasons for informal carers to become involved in research. The most common perceived obstacle was lack of time and it was reported by more women than men.

Conclusion: Our study contributes with new knowledge of informal carers’ perceived motivations and obstacles regarding carer involvement in research. Paying attention to the differing motivational dimensions held by informal carers could help researchers create conditions for more inclusive and systematic participation of informal carers within research. Thereby, increasing the opportunities for research that is deemed to be of higher societal impact. IRRID (International Registered Report Identifier): RR2-10.2196/17759.

Place, publisher, year, edition, pages
BioMed Central, 2021. Vol. 7, no 1, article id 80
Keywords [en]
General Health Professions, Health(social science)
National Category
Health Sciences
Research subject
Health and Caring Sciences
Identifiers
URN: urn:nbn:se:lnu:diva-107848DOI: 10.1186/s40900-021-00321-xScopus ID: 2-s2.0-85118706709Local ID: 2021OAI: oai:DiVA.org:lnu-107848DiVA, id: diva2:1609836
Funder
Forte, Swedish Research Council for Health, Working Life and WelfareAvailable from: 2021-11-09 Created: 2021-11-09 Last updated: 2022-06-13Bibliographically approved
In thesis
1. Involving informal carers in health and social care research
Open this publication in new window or tab >>Involving informal carers in health and social care research
2022 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The overarching aim of this thesis is to gain a deeper understanding of informal carer involvement in health and social care research, from the perspective of informal carers themselves as well as from a researcher perspective.The thesis is comprised of three qualitative studies and one quantitative study. Three studies are from the perspective of informal carers, and one is from the perspective of researchers. The three qualitative studies used qualitative content analysis and discourse psychology, while the quantitative study used descriptive statistics, logistic regression and two different types of factor analysis. The data collection methods varied; in the first and the fourth studies, the data were derived from individual interviews, in the second study participants completed a questionnaire, and in the third study the data were collected from group meetings with carers.The findings showed that carer involvement in research is complex, comprising both benefits and challenges, and demands a high level of engagement from all involved, throughout the research process. The researcher must acknowledge that carers’ motivations for involvement in research vary, and the researcher should adapt their recruitment methods accordingly. It is easy to believe that becoming involved in research is an individual choice, but the findings revealed that only some carer groups choose to become involved in research. The findings also showed that the knowledge brought by carers to the research stretches far beyond their practical experiences of caring. When researchers choose to involve carers in research, their research would benefit greatly if they acknowledged the possibility that they themselves might become relationally and emotionally involved.Successful carer involvement in research therefore encompasses both a meaningful process and a meaningful result. As carers are a heterogeneous group, this places demands on a researcher’s flexibility and creativity to manage the recruitment process and involve a broad cross section of carers. If they fail in this, the research carried out and any interventions developed risk being valid for particular groups of carers and invalid in relation to other carer groups.

Place, publisher, year, edition, pages
Kalmar: Linnaeus University Press, 2022. p. 87
Series
Linnaeus University Dissertations ; 453
Keywords
carer involvement, health and social care research, heterogeneity, identity, participatory research, patient and public involvement
National Category
Health Sciences
Research subject
Health and Caring Sciences
Identifiers
urn:nbn:se:lnu:diva-112828 (URN)9789189709072 (ISBN)9789189709089 (ISBN)
Public defence
2022-06-03, Sal Lapis, Hus Vita, Kalmar, 10:00 (Swedish)
Opponent
Supervisors
Available from: 2022-05-12 Created: 2022-05-12 Last updated: 2024-03-12Bibliographically approved

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Malm, CamillaAndersson, StefanHanson, Elizabeth

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