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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.
Lund University, Sweden.
Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
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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: 000482906500008OAI: oai:DiVA.org:lnu-89259DiVA, id: diva2:1354183
Available from: 2019-09-24 Created: 2019-09-24 Last updated: 2019-09-24Bibliographically approved

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Malm, CamillaAndersson, StefanMagnusson, LennartHanson, Elizabeth

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International journal of sociology and social policy
Health Care Service and Management, Health Policy and Services and Health Economy

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