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A balance between putting on the researcher's hat and being a fellow human being: a researcher perspective on informal carer involvement in health and social care research
Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. (Swedish Family Care Competence Ctr)ORCID iD: 0000-0002-0808-0004
Lund University, Sweden.ORCID iD: 0000-0003-2347-7656
Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. (Swedish Family Care Competence Ctr)ORCID iD: 0000-0001-5023-7493
Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. (Swedish Family Care Competence Ctr)ORCID iD: 0000-0001-7609-4822
2022 (English)In: Health Research Policy and Systems, E-ISSN 1478-4505, Vol. 20, no 1, article id 135Article in journal (Refereed) Published
Abstract [en]

Background: Public involvement in health and social care research is increasingly prioritized by policy-makers and research funders. Often, the impact of the involvement is described in terms of how it has contributed to the research outcomes and how it has affected the involved members of the public. There is a dearth of studies reporting from the perspective of researchers themselves of having involved members of the public in their research. Nevertheless, there is a general expectation for researchers to accept and embrace public involvement in research. This study aims to explore researchers' views of involving informal carers in health and social care research. Methods: Eleven individual in-depth interviews with researchers in the fields of social work, caring science, health science and medical science constituted the dataset of this qualitative study, inspired by discourse psychology. Results: The qualitative data analysis resulted in two interpretative repertoires describing researchers' views of involving informal carers in research, "Philosophy of Science " and "Personal relationships and growth ". Both repertoires need to be recognized; however, as of today, the Philosophy of Science repertoire is more acknowledged, while the second repertoire describing empathy, relationships and emotions may be viewed as the researcher being "unprofessional ". Further, the findings highlighted the dual perspective of being a researcher and a carer as creating opportunities for growth on the part of the researcher, on both a professional and a personal level. Conclusions: Researchers and their research work would benefit from acknowledging, discussing and reporting both interpretative repertoires in their publications, as well as recognizing the benefit of dialectal positions, for example, having a dual perspective as both a researcher and an informal carer.

Place, publisher, year, edition, pages
BioMed Central (BMC), 2022. Vol. 20, no 1, article id 135
Keywords [en]
Informal carer involvement, Researchers, Health and social care research, Public and patient involvement (PPI), Interviews, Discourse psychology
National Category
Nursing
Research subject
Health and Caring Sciences, Nursing
Identifiers
URN: urn:nbn:se:lnu:diva-118754DOI: 10.1186/s12961-022-00946-8ISI: 000899891300001PubMedID: 36527014Scopus ID: 2-s2.0-85144096685OAI: oai:DiVA.org:lnu-118754DiVA, id: diva2:1731333
Available from: 2023-01-26 Created: 2023-01-26 Last updated: 2024-07-04Bibliographically 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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