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Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals’ perceptions and experiences

BACKGROUND: Research is crucial to improve treatment, survival and quality of life for children with cancer. However, recruitment of children for research raises ethical challenges. The aim of this study was to explore and describe ethical values and challenges related to the recruitment of children...

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Autores principales: Norbäck, Kajsa, Höglund, Anna T., Godskesen, Tove, Frygner-Holm, Sara
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10012289/
https://www.ncbi.nlm.nih.gov/pubmed/36918868
http://dx.doi.org/10.1186/s12910-023-00901-4
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author Norbäck, Kajsa
Höglund, Anna T.
Godskesen, Tove
Frygner-Holm, Sara
author_facet Norbäck, Kajsa
Höglund, Anna T.
Godskesen, Tove
Frygner-Holm, Sara
author_sort Norbäck, Kajsa
collection PubMed
description BACKGROUND: Research is crucial to improve treatment, survival and quality of life for children with cancer. However, recruitment of children for research raises ethical challenges. The aim of this study was to explore and describe ethical values and challenges related to the recruitment of children with cancer for research, from the perspectives and experiences of healthcare professionals in the Swedish context. Another aim was to explore their perceptions of research ethics competence in recruiting children for research. METHODS: An explorative qualitative study using semi-structured interviews with key informants. Seven physicians and ten nurses were interviewed. Interviews were analysed using inductive qualitative content analysis. RESULTS: The respondents’ ethical challenges and values in recruitment mainly concerned establishing relationships and trust, meeting informational needs, acknowledging vulnerability, and balancing roles and interests. Ensuring ethical competence was raised as important, and interpersonal and communicative skills were highlighted. CONCLUSION: This study provides empirical insight into recruitment of children with cancer, from the perspectives of healthcare professionals. It also contributes to the understanding of recruitment as a relational process, where aspects of vulnerability, trust and relationship building are important, alongside meeting informational needs. The results provide knowledge on the complexities raised by paediatric research and underpin the importance of building research ethics competence to ensure that the rights and interests of children with cancer are protected in research. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12910-023-00901-4.
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spelling pubmed-100122892023-03-14 Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals’ perceptions and experiences Norbäck, Kajsa Höglund, Anna T. Godskesen, Tove Frygner-Holm, Sara BMC Med Ethics Research BACKGROUND: Research is crucial to improve treatment, survival and quality of life for children with cancer. However, recruitment of children for research raises ethical challenges. The aim of this study was to explore and describe ethical values and challenges related to the recruitment of children with cancer for research, from the perspectives and experiences of healthcare professionals in the Swedish context. Another aim was to explore their perceptions of research ethics competence in recruiting children for research. METHODS: An explorative qualitative study using semi-structured interviews with key informants. Seven physicians and ten nurses were interviewed. Interviews were analysed using inductive qualitative content analysis. RESULTS: The respondents’ ethical challenges and values in recruitment mainly concerned establishing relationships and trust, meeting informational needs, acknowledging vulnerability, and balancing roles and interests. Ensuring ethical competence was raised as important, and interpersonal and communicative skills were highlighted. CONCLUSION: This study provides empirical insight into recruitment of children with cancer, from the perspectives of healthcare professionals. It also contributes to the understanding of recruitment as a relational process, where aspects of vulnerability, trust and relationship building are important, alongside meeting informational needs. The results provide knowledge on the complexities raised by paediatric research and underpin the importance of building research ethics competence to ensure that the rights and interests of children with cancer are protected in research. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12910-023-00901-4. BioMed Central 2023-03-14 /pmc/articles/PMC10012289/ /pubmed/36918868 http://dx.doi.org/10.1186/s12910-023-00901-4 Text en © The Author(s) 2023 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Research
Norbäck, Kajsa
Höglund, Anna T.
Godskesen, Tove
Frygner-Holm, Sara
Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals’ perceptions and experiences
title Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals’ perceptions and experiences
title_full Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals’ perceptions and experiences
title_fullStr Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals’ perceptions and experiences
title_full_unstemmed Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals’ perceptions and experiences
title_short Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals’ perceptions and experiences
title_sort ethical concerns when recruiting children with cancer for research: swedish healthcare professionals’ perceptions and experiences
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10012289/
https://www.ncbi.nlm.nih.gov/pubmed/36918868
http://dx.doi.org/10.1186/s12910-023-00901-4
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