Fostering patients' participation in oncology research by developing psychological empowerment and a sense of community.

Autor: Bauquier C; Inserm U1296, Radiations: Santé, Défense, Environnement (Radiation: Health, Defense, Environment), University Lumière Lyon 2, France. Electronic address: charlotte.bauquier@univ-lyon2.fr., Pannard M; Inserm U1296, Radiations: Santé, Défense, Environnement (Radiation: Health, Defense, Environment), University Lumière Lyon 2, France., Andrin A; Inserm U1296, Radiations: Santé, Défense, Environnement (Radiation: Health, Defense, Environment), University Lumière Lyon 2, France., Biaudet J; Cancéropôle Lyon Auvergne-Rhône-Alpes (CLARA), 69007, Lyon, France., Parnalland S; Centre Georges-François Leclerc, 21000, Dijon, France., Dabakuyo S; Centre Georges-François Leclerc, 21000, Dijon, France., Guillemin F; INSERM CIC 1433 Epidémiologie Clinique, Centres Hospitaliers Régionaux et Universitaires de Nancy, 54000, Nancy, France., Paret G; Cancéropôle Lyon Auvergne-Rhône-Alpes (CLARA), 69007, Lyon, France., Jacob G; Association Seintinelles, 75014, Paris, France., Préau M; Inserm U1296, Radiations: Santé, Défense, Environnement (Radiation: Health, Defense, Environment), University Lumière Lyon 2, France.
Jazyk: angličtina
Zdroj: Journal of epidemiology and population health [J Epidemiol Popul Health] 2024 Dec; Vol. 72 (6), pp. 202781. Date of Electronic Publication: 2024 Oct 30.
DOI: 10.1016/j.jeph.2024.202781
Abstrakt: Objectives: A "patient-researcher" training intervention was designed to improve participants' empowerment by building on their level of critical health literacy and to build a trustful partnership between participants and researchers, with the longer-term objective of co-constructing a community-based research project. The participants in the training intervention were recruited through the collaborative research platform "Seintinelles". This training intervention was aimed at patients or former patients suffering from cancer. The study's objective is to identify intervention's elements that appear to be relevant and those that should be improved for future implementation.
Methods: This study is descriptive research in the form of a case study. A questionnaire (post-intervention) and logbook were designed to analyze the implementation of patient-researcher training.
Results: Results suggest that the intervention should be flexible to adapt content to formal and informal exchanges. Participants were satisfied, although the intervention did not completely meet their expectations. Following the intervention, most participants felt able to participate in a research study.
Conclusion: At the end of this analysis, we can conclude that the 'patient-researcher' training intervention fulfilled its two objectives. First, it provided the knowledge and skills necessary for the implementation of a community-based research study and helped participants feel that they could take part in the different stages of such a study. Second, it initiated the construction of an alliance between 'lived experience' experts and scientific experts.
Competing Interests: Conflicts of interest None of the authors have any conflicts of interest to declare.
(Copyright © 2024 Elsevier Masson SAS. All rights reserved.)
Databáze: MEDLINE
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