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Cancer treatment decision-making among parents of paediatric oncology patients in Guatemala: a mixed-methods study

OBJECTIVES: To examine treatment decision-making priorities and experiences among parents of children with cancer in Guatemala. SETTING: This study was conducted at Guatemala’s National Pediatric Cancer Center in Guatemala City. PARTICIPANTS: Spanish-speaking parents of paediatric patients (≤18 year...

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Autores principales: Graetz, Dylan E, Rivas, Silvia, Wang, Huiqi, Vedaraju, Yuvanesh, Ferrara, Gia, Fuentes, Lucia, Cáceres-Serrano, Ana, Antillon-Klussmann, Federico, Devidas, Meenakshi, Metzger, Monika, Rodriguez-Galindo, Carlos, Mack, Jennifer W
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9379539/
https://www.ncbi.nlm.nih.gov/pubmed/35953257
http://dx.doi.org/10.1136/bmjopen-2021-057350
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author Graetz, Dylan E
Rivas, Silvia
Wang, Huiqi
Vedaraju, Yuvanesh
Ferrara, Gia
Fuentes, Lucia
Cáceres-Serrano, Ana
Antillon-Klussmann, Federico
Devidas, Meenakshi
Metzger, Monika
Rodriguez-Galindo, Carlos
Mack, Jennifer W
author_facet Graetz, Dylan E
Rivas, Silvia
Wang, Huiqi
Vedaraju, Yuvanesh
Ferrara, Gia
Fuentes, Lucia
Cáceres-Serrano, Ana
Antillon-Klussmann, Federico
Devidas, Meenakshi
Metzger, Monika
Rodriguez-Galindo, Carlos
Mack, Jennifer W
author_sort Graetz, Dylan E
collection PubMed
description OBJECTIVES: To examine treatment decision-making priorities and experiences among parents of children with cancer in Guatemala. SETTING: This study was conducted at Guatemala’s National Pediatric Cancer Center in Guatemala City. PARTICIPANTS: Spanish-speaking parents of paediatric patients (≤18 years of age) diagnosed with any form of cancer within the 8 weeks prior to study enrolment. The quantitative portion of this study included 100 parent participants; the qualitative component included 20 parents. Most participants were Catholic or Evangelical Spanish-speaking mothers. OUTCOMES: Priorities and experiences of cancer treatment decision-making including decision-making role and experienced regret. RESULTS: A range of paediatric ages and cancer diagnoses were included. Most Guatemalan parents surveyed (70%) made decisions about their child’s cancer together and almost all (94%) without input from their community. Surveyed parents predominately preferred shared decision-making with their child’s oncologist (76%), however 69% agreed it was best not to be provided with many options. Two-thirds of surveyed parents (65%) held their preferred role in decision-making, with fathers more likely to hold their preferred role than mothers (p=0.02). A small number of parents (11%) experienced heightened decisional regret, which did not correlate with socio-demographic characteristics or preferred decision-making role. Qualitative results supported quantitative findings, demonstrating a decision-making process that emphasised trust and honesty. CONCLUSIONS: Guatemalan parents preferred to make decisions with their medical team and appreciated providers who were honest and inclusive, but directive about decisions. This study reinforces the importance of the provider–parent relationship and encourages clinicians in all settings to ask about and honour each parent’s desired role in decision-making.
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spelling pubmed-93795392022-08-30 Cancer treatment decision-making among parents of paediatric oncology patients in Guatemala: a mixed-methods study Graetz, Dylan E Rivas, Silvia Wang, Huiqi Vedaraju, Yuvanesh Ferrara, Gia Fuentes, Lucia Cáceres-Serrano, Ana Antillon-Klussmann, Federico Devidas, Meenakshi Metzger, Monika Rodriguez-Galindo, Carlos Mack, Jennifer W BMJ Open Global Health OBJECTIVES: To examine treatment decision-making priorities and experiences among parents of children with cancer in Guatemala. SETTING: This study was conducted at Guatemala’s National Pediatric Cancer Center in Guatemala City. PARTICIPANTS: Spanish-speaking parents of paediatric patients (≤18 years of age) diagnosed with any form of cancer within the 8 weeks prior to study enrolment. The quantitative portion of this study included 100 parent participants; the qualitative component included 20 parents. Most participants were Catholic or Evangelical Spanish-speaking mothers. OUTCOMES: Priorities and experiences of cancer treatment decision-making including decision-making role and experienced regret. RESULTS: A range of paediatric ages and cancer diagnoses were included. Most Guatemalan parents surveyed (70%) made decisions about their child’s cancer together and almost all (94%) without input from their community. Surveyed parents predominately preferred shared decision-making with their child’s oncologist (76%), however 69% agreed it was best not to be provided with many options. Two-thirds of surveyed parents (65%) held their preferred role in decision-making, with fathers more likely to hold their preferred role than mothers (p=0.02). A small number of parents (11%) experienced heightened decisional regret, which did not correlate with socio-demographic characteristics or preferred decision-making role. Qualitative results supported quantitative findings, demonstrating a decision-making process that emphasised trust and honesty. CONCLUSIONS: Guatemalan parents preferred to make decisions with their medical team and appreciated providers who were honest and inclusive, but directive about decisions. This study reinforces the importance of the provider–parent relationship and encourages clinicians in all settings to ask about and honour each parent’s desired role in decision-making. BMJ Publishing Group 2022-08-11 /pmc/articles/PMC9379539/ /pubmed/35953257 http://dx.doi.org/10.1136/bmjopen-2021-057350 Text en © Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. https://creativecommons.org/licenses/by-nc/4.0/This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/ (https://creativecommons.org/licenses/by-nc/4.0/) .
spellingShingle Global Health
Graetz, Dylan E
Rivas, Silvia
Wang, Huiqi
Vedaraju, Yuvanesh
Ferrara, Gia
Fuentes, Lucia
Cáceres-Serrano, Ana
Antillon-Klussmann, Federico
Devidas, Meenakshi
Metzger, Monika
Rodriguez-Galindo, Carlos
Mack, Jennifer W
Cancer treatment decision-making among parents of paediatric oncology patients in Guatemala: a mixed-methods study
title Cancer treatment decision-making among parents of paediatric oncology patients in Guatemala: a mixed-methods study
title_full Cancer treatment decision-making among parents of paediatric oncology patients in Guatemala: a mixed-methods study
title_fullStr Cancer treatment decision-making among parents of paediatric oncology patients in Guatemala: a mixed-methods study
title_full_unstemmed Cancer treatment decision-making among parents of paediatric oncology patients in Guatemala: a mixed-methods study
title_short Cancer treatment decision-making among parents of paediatric oncology patients in Guatemala: a mixed-methods study
title_sort cancer treatment decision-making among parents of paediatric oncology patients in guatemala: a mixed-methods study
topic Global Health
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9379539/
https://www.ncbi.nlm.nih.gov/pubmed/35953257
http://dx.doi.org/10.1136/bmjopen-2021-057350
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