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The involvement and autonomy of young children undergoing elective paediatric cardiac surgery: a qualitative study

BACKGROUND: Standards generally reported in the literature about informing children and respecting their consent or refusal before elective heart surgery may differ from actual practice. This research aims to summarize the main themes in the literature about paediatric anaesthesia and compare these...

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Autores principales: Alderson, Priscilla, Cohen, Marc, Davies, Ben, Elliott, Martin J., Johnson, Mae, Lotteria, Alessandra, Mendizabal, Rosa, Stockton, Emma, Stylianou, Michael, Sutcliffe, Katy, Wellesley, Hugo
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9153234/
https://www.ncbi.nlm.nih.gov/pubmed/35641980
http://dx.doi.org/10.1186/s13019-022-01889-5
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author Alderson, Priscilla
Cohen, Marc
Davies, Ben
Elliott, Martin J.
Johnson, Mae
Lotteria, Alessandra
Mendizabal, Rosa
Stockton, Emma
Stylianou, Michael
Sutcliffe, Katy
Wellesley, Hugo
author_facet Alderson, Priscilla
Cohen, Marc
Davies, Ben
Elliott, Martin J.
Johnson, Mae
Lotteria, Alessandra
Mendizabal, Rosa
Stockton, Emma
Stylianou, Michael
Sutcliffe, Katy
Wellesley, Hugo
author_sort Alderson, Priscilla
collection PubMed
description BACKGROUND: Standards generally reported in the literature about informing children and respecting their consent or refusal before elective heart surgery may differ from actual practice. This research aims to summarize the main themes in the literature about paediatric anaesthesia and compare these with research findings on how health professionals counsel young children before elective heart surgery, respect their consent or refusal, and maintain patient-centred care. METHODS: This qualitative research involved: literature reviews about children’s consent to surgery and major interventions; observations of wards, clinics and medical meetings in two paediatric cardiology departments, October 2019 to February 2020; audio-recorded semi-structured interviews with 45 hospital staff, including 5 anaesthetists, and related experts, November 2019 to April 2021; interviews with 16 families, with children aged 6- to 15-years and their parents shortly after elective heart surgery, and some months later (reported in other papers); thematic data analysis; and research reports on how different professions contribute to children’s informed decisions for heart surgery. RESULTS: The medical, ethics and English legal literature tend to assume legal minors cannot refuse major recommended treatment, and cannot consent until they are 12 years or older. Little is said about informing pre-competent children. If children resist, some anaesthetists rely on sedation and distraction, and avoid much informed discussion, aiming to reduce peri-operative anxiety. However, interviewees reported informing young children, and respecting their consent or refusal before elective surgery. They may delay elective surgery and provide further information and support, aiming to reduce fear and promote trust. Six years of age was commonly cited as the threshold for respecting consent to heart transplantation. CONCLUSION: Differing views about younger children’s competence, anxiety and best interests support different reactions to children’s consent and refusal before elective heart surgery. This paper reports the zero-restraint policy followed for over a decade in at least one leading surgery centre. The related law and literature need to be updated, to take more account of evidence of actual practice.
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spelling pubmed-91532342022-06-02 The involvement and autonomy of young children undergoing elective paediatric cardiac surgery: a qualitative study Alderson, Priscilla Cohen, Marc Davies, Ben Elliott, Martin J. Johnson, Mae Lotteria, Alessandra Mendizabal, Rosa Stockton, Emma Stylianou, Michael Sutcliffe, Katy Wellesley, Hugo J Cardiothorac Surg Research Article BACKGROUND: Standards generally reported in the literature about informing children and respecting their consent or refusal before elective heart surgery may differ from actual practice. This research aims to summarize the main themes in the literature about paediatric anaesthesia and compare these with research findings on how health professionals counsel young children before elective heart surgery, respect their consent or refusal, and maintain patient-centred care. METHODS: This qualitative research involved: literature reviews about children’s consent to surgery and major interventions; observations of wards, clinics and medical meetings in two paediatric cardiology departments, October 2019 to February 2020; audio-recorded semi-structured interviews with 45 hospital staff, including 5 anaesthetists, and related experts, November 2019 to April 2021; interviews with 16 families, with children aged 6- to 15-years and their parents shortly after elective heart surgery, and some months later (reported in other papers); thematic data analysis; and research reports on how different professions contribute to children’s informed decisions for heart surgery. RESULTS: The medical, ethics and English legal literature tend to assume legal minors cannot refuse major recommended treatment, and cannot consent until they are 12 years or older. Little is said about informing pre-competent children. If children resist, some anaesthetists rely on sedation and distraction, and avoid much informed discussion, aiming to reduce peri-operative anxiety. However, interviewees reported informing young children, and respecting their consent or refusal before elective surgery. They may delay elective surgery and provide further information and support, aiming to reduce fear and promote trust. Six years of age was commonly cited as the threshold for respecting consent to heart transplantation. CONCLUSION: Differing views about younger children’s competence, anxiety and best interests support different reactions to children’s consent and refusal before elective heart surgery. This paper reports the zero-restraint policy followed for over a decade in at least one leading surgery centre. The related law and literature need to be updated, to take more account of evidence of actual practice. BioMed Central 2022-05-31 /pmc/articles/PMC9153234/ /pubmed/35641980 http://dx.doi.org/10.1186/s13019-022-01889-5 Text en © The Author(s) 2022 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 Article
Alderson, Priscilla
Cohen, Marc
Davies, Ben
Elliott, Martin J.
Johnson, Mae
Lotteria, Alessandra
Mendizabal, Rosa
Stockton, Emma
Stylianou, Michael
Sutcliffe, Katy
Wellesley, Hugo
The involvement and autonomy of young children undergoing elective paediatric cardiac surgery: a qualitative study
title The involvement and autonomy of young children undergoing elective paediatric cardiac surgery: a qualitative study
title_full The involvement and autonomy of young children undergoing elective paediatric cardiac surgery: a qualitative study
title_fullStr The involvement and autonomy of young children undergoing elective paediatric cardiac surgery: a qualitative study
title_full_unstemmed The involvement and autonomy of young children undergoing elective paediatric cardiac surgery: a qualitative study
title_short The involvement and autonomy of young children undergoing elective paediatric cardiac surgery: a qualitative study
title_sort involvement and autonomy of young children undergoing elective paediatric cardiac surgery: a qualitative study
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9153234/
https://www.ncbi.nlm.nih.gov/pubmed/35641980
http://dx.doi.org/10.1186/s13019-022-01889-5
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