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Landscape of pediatric cancer treatment refusal and abandonment in the US: A qualitative study

OBJECTIVE: To describe United States (US) pediatric oncologists’ experiences with treatment refusal or abandonment, exploring types and frequency of decision-making conflicts, and their impact. STUDY DESIGN: We conducted exploratory qualitative interviews of pediatric oncologists (n = 30) with exper...

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Autores principales: Benedetti, Daniel J., Hammack-Aviran, Catherine M., Diehl, Carolyn, Beskow, Laura M.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9869139/
https://www.ncbi.nlm.nih.gov/pubmed/36699305
http://dx.doi.org/10.3389/fped.2022.1049661
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author Benedetti, Daniel J.
Hammack-Aviran, Catherine M.
Diehl, Carolyn
Beskow, Laura M.
author_facet Benedetti, Daniel J.
Hammack-Aviran, Catherine M.
Diehl, Carolyn
Beskow, Laura M.
author_sort Benedetti, Daniel J.
collection PubMed
description OBJECTIVE: To describe United States (US) pediatric oncologists’ experiences with treatment refusal or abandonment, exploring types and frequency of decision-making conflicts, and their impact. STUDY DESIGN: We conducted exploratory qualitative interviews of pediatric oncologists (n = 30) with experience caring for a pediatric patient who refused or abandoned curative treatment. Interviewees were recruited using convenience and nominated expert sampling, soliciting experiences from diverse geographic locations and institution sizes across the US. We analyzed transcripts using applied thematic analysis to identify and refine meaningful domains. RESULTS: Many oncologists reported multiple experiences with refusal and abandonment. Most anticipated case frequency would increase due to misinformation, particularly on the internet. Interviewees described cases of treatment refusal and abandonment, but also a wider variety of cases than previously described in existing publications, including cases involving: non-adherence; negotiations for different treatments; negotiations for complementary and alternative medicine; delayed treatment initiation; and refusal of a component of recommended therapy. Cases often involved multiple stages or types of conflicts. Recurring patient/family behaviors emerged: clear opposition to treatment from the outset; hesitancy about treatment despite initiating therapy; and psychosocial circumstances becoming an obstacle to treatment completion. Oncologists revealed substantial professional and personal repercussions of these cases. CONCLUSION: Oncologist interviews highlight a broad range of conflicts, yielding a taxonomy of treatment refusal, non-adherence and abandonment (TRNA) that accounts for the heterogeneity of situations described. Cases’ complexity and interrelatedness points to a functional model of TRNA that includes families’ behaviors. This preliminary taxonomy and model warrant further research and examination to refine the model and generate strategies to prevent and mitigate TRNA.
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spelling pubmed-98691392023-01-24 Landscape of pediatric cancer treatment refusal and abandonment in the US: A qualitative study Benedetti, Daniel J. Hammack-Aviran, Catherine M. Diehl, Carolyn Beskow, Laura M. Front Pediatr Pediatrics OBJECTIVE: To describe United States (US) pediatric oncologists’ experiences with treatment refusal or abandonment, exploring types and frequency of decision-making conflicts, and their impact. STUDY DESIGN: We conducted exploratory qualitative interviews of pediatric oncologists (n = 30) with experience caring for a pediatric patient who refused or abandoned curative treatment. Interviewees were recruited using convenience and nominated expert sampling, soliciting experiences from diverse geographic locations and institution sizes across the US. We analyzed transcripts using applied thematic analysis to identify and refine meaningful domains. RESULTS: Many oncologists reported multiple experiences with refusal and abandonment. Most anticipated case frequency would increase due to misinformation, particularly on the internet. Interviewees described cases of treatment refusal and abandonment, but also a wider variety of cases than previously described in existing publications, including cases involving: non-adherence; negotiations for different treatments; negotiations for complementary and alternative medicine; delayed treatment initiation; and refusal of a component of recommended therapy. Cases often involved multiple stages or types of conflicts. Recurring patient/family behaviors emerged: clear opposition to treatment from the outset; hesitancy about treatment despite initiating therapy; and psychosocial circumstances becoming an obstacle to treatment completion. Oncologists revealed substantial professional and personal repercussions of these cases. CONCLUSION: Oncologist interviews highlight a broad range of conflicts, yielding a taxonomy of treatment refusal, non-adherence and abandonment (TRNA) that accounts for the heterogeneity of situations described. Cases’ complexity and interrelatedness points to a functional model of TRNA that includes families’ behaviors. This preliminary taxonomy and model warrant further research and examination to refine the model and generate strategies to prevent and mitigate TRNA. Frontiers Media S.A. 2023-01-09 /pmc/articles/PMC9869139/ /pubmed/36699305 http://dx.doi.org/10.3389/fped.2022.1049661 Text en © 2023 Benedetti, Hammack-Aviran, Diehl and Beskow. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY) (https://creativecommons.org/licenses/by/4.0/) . The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Pediatrics
Benedetti, Daniel J.
Hammack-Aviran, Catherine M.
Diehl, Carolyn
Beskow, Laura M.
Landscape of pediatric cancer treatment refusal and abandonment in the US: A qualitative study
title Landscape of pediatric cancer treatment refusal and abandonment in the US: A qualitative study
title_full Landscape of pediatric cancer treatment refusal and abandonment in the US: A qualitative study
title_fullStr Landscape of pediatric cancer treatment refusal and abandonment in the US: A qualitative study
title_full_unstemmed Landscape of pediatric cancer treatment refusal and abandonment in the US: A qualitative study
title_short Landscape of pediatric cancer treatment refusal and abandonment in the US: A qualitative study
title_sort landscape of pediatric cancer treatment refusal and abandonment in the us: a qualitative study
topic Pediatrics
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9869139/
https://www.ncbi.nlm.nih.gov/pubmed/36699305
http://dx.doi.org/10.3389/fped.2022.1049661
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