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Moving beyond the first response phenomenon: Exploring carers' views and experiences of being involved in research and development work
Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.ORCID iD: 0000-0002-0808-0004
Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.ORCID iD: 0000-0001-5023-7493
Lund University, Sweden.
Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.ORCID iD: 0000-0003-2028-6213
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2019 (English)In: International journal of sociology and social policy, ISSN 0144-333X, E-ISSN 1758-6720, Vol. 39, no 7-8, p. 627-643Article in journal (Refereed) Published
Abstract [en]

Purpose In Sweden, the care of older people and people with disabilities is increasingly carried out by informal carers, often family members, who are unpaid and outside a professional or formal framework. While there is an increasing awareness of the role of carers within service systems and their own needs for support, their involvement in research is underexplored. The purpose of this paper is to explore carers' views and experiences of involvement in research and development (R&D) work. Design/methodology/approach A qualitative study was conducted, consisting of 12 individual interviews with carers from different local Swedish carer organizations. Findings Core findings included carers' discussions of the perceived challenges and benefits of their involvement in research, both generally and more specifically, in the context of their involvement in the development of a national carer strategy. Research limitations/implications - Limitations included the relative lack of male carer participants and the convenience sample. Practical implications - Authentic carer involvement in research demands a high level of engagement from researchers during the entire research process. The provided CRAC framework, with reference to the themes community, reciprocity, advocacy and circumstantiality, may help researchers to understand and interpret carer involvement in research and provide the prerequisites for their involvement. Originality/value There is a dearth of studies that systematically examine carer involvement in research. This paper attempts to redress this gap by providing a nuanced analysis of carer involvement in R&D work from the perspective of carers themselves.

Place, publisher, year, edition, pages
Emerald Group Publishing Limited, 2019. Vol. 39, no 7-8, p. 627-643
Keywords [en]
Identity, Heterogeneity, Research and development, Social policy, Carer involvement, Carer strategy
National Category
Health Care Service and Management, Health Policy and Services and Health Economy
Research subject
Health and Caring Sciences
Identifiers
URN: urn:nbn:se:lnu:diva-89259DOI: 10.1108/IJSSP-05-2019-0091ISI: 000482906500008Scopus ID: 2-s2.0-85071592502OAI: oai:DiVA.org:lnu-89259DiVA, id: diva2:1354183
Available from: 2019-09-24 Created: 2019-09-24 Last updated: 2025-05-15Bibliographically 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: 2025-05-15Bibliographically approved

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