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Exploring the knowledge contributions of carers involved in a group process aimed at co-creating a targeted support intervention
Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.ORCID iD: 0000-0002-0808-0004
Lund University, Sweden.
Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.ORCID iD: 0000-0001-7609-4822
2023 (English)In: International Journal of Care and Caring, ISSN 2397-8821, E-ISSN 2397-883X , Vol. 7, no 3, p. 479-497Article in journal (Refereed) Published
Abstract [en]

Patient and public involvement is a way of ensuring that research and practices are more responsive to their target groups. This study, inspired by discourse psychology, explores the knowledge contributions of informal carers who participated in group meetings to co-create a support intervention. Findings highlight that carers’ knowledge is complex, including more than practical caring experiences. Acknowledging carers’ knowledge contributions and involving a heterogeneous sample of carers are key considerations for patient and public involvement in research; otherwise, there is a danger of establishing risks of injustice. Accepting the multifaceted knowledge of carers could increase the validity of research and the relevance of interventions developed.

Place, publisher, year, edition, pages
Bristol University Press , 2023. Vol. 7, no 3, p. 479-497
Keywords [en]
carers, carer knowledge, discourse psychology, patient and public involvement
National Category
Nursing
Research subject
Health and Caring Sciences, Caring Science
Identifiers
URN: urn:nbn:se:lnu:diva-119620DOI: 10.1332/239788221x16740618578816ISI: 000972016500001Scopus ID: 2-s2.0-85167419122OAI: oai:DiVA.org:lnu-119620DiVA, id: diva2:1740626
Available from: 2023-03-01 Created: 2023-03-01 Last updated: 2023-11-15Bibliographically 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: 2024-03-12Bibliographically approved

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Malm, CamillaAndersson, StefanHanson, Elizabeth

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