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How family caregivers of persons with advanced cancer assist with upstream healthcare decision-making: A qualitative study
AIMS: Numerous healthcare decisions are faced by persons with advanced cancer from diagnosis to end-of-life. The family caregiver role in these decisions has focused on being a surrogate decision-maker, however, little is known about the caregiver’s role in supporting upstream patient decision-makin...
Autores principales: | , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Public Library of Science
2019
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6415885/ https://www.ncbi.nlm.nih.gov/pubmed/30865681 http://dx.doi.org/10.1371/journal.pone.0212967 |
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author | Dionne-Odom, J. Nicholas Ejem, Deborah Wells, Rachel Barnato, Amber E. Taylor, Richard A. Rocque, Gabrielle B. Turkman, Yasemin E. Kenny, Matthew Ivankova, Nataliya V. Bakitas, Marie A. Martin, Michelle Y. |
author_facet | Dionne-Odom, J. Nicholas Ejem, Deborah Wells, Rachel Barnato, Amber E. Taylor, Richard A. Rocque, Gabrielle B. Turkman, Yasemin E. Kenny, Matthew Ivankova, Nataliya V. Bakitas, Marie A. Martin, Michelle Y. |
author_sort | Dionne-Odom, J. Nicholas |
collection | PubMed |
description | AIMS: Numerous healthcare decisions are faced by persons with advanced cancer from diagnosis to end-of-life. The family caregiver role in these decisions has focused on being a surrogate decision-maker, however, little is known about the caregiver’s role in supporting upstream patient decision-making. We aimed to describe the roles of family caregivers in assisting community-dwelling advanced cancer patients with healthcare decision-making across settings and contexts. METHODS: Qualitative study using one-on-one, semi-structured interviews with community-dwelling persons with metastatic cancer (n = 18) and their family caregivers (n = 20) recruited from outpatient oncology clinics of a large tertiary care academic medical center, between October 2016 and October 2017. Transcribed interviews were analyzed using a thematic analysis approach. FINDINGS: Caregivers averaged 56 years and were mostly female (95%), white (85%), and the patient’s partner/spouse (70%). Patients averaged 58 years and were mostly male (67%) in self-reported “fair” or “poor” health (50%) with genitourinary (33%), lung (17%), and hematologic (17%) cancers. Themes describing family member roles in supporting patients’ upstream healthcare decision-making were: 1) seeking information about the cancer, its trajectory, and treatments options; 2) ensuring family and healthcare clinicians have a common understanding of the patient’s treatment plan and condition; 3) facilitating discussions with patients about their values and the framing of their illness; 5) posing “what if” scenarios about current and potential future health states and treatments; 6) addressing collateral decisions (e.g., work arrangements) resulting from medical treatment choices; 6) originating healthcare-related decision points, including decisions about seeking emergency care; and 7) making healthcare decisions for patients who preferred to delegate healthcare decisions to their family caregivers. CONCLUSIONS: These findings highlight a previously unreported and understudied set of critical decision partnering roles that cancer family caregivers play in patient healthcare decision-making. Optimizing these roles may represent novel targets for early decision support interventions for family caregivers. |
format | Online Article Text |
id | pubmed-6415885 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2019 |
publisher | Public Library of Science |
record_format | MEDLINE/PubMed |
spelling | pubmed-64158852019-04-02 How family caregivers of persons with advanced cancer assist with upstream healthcare decision-making: A qualitative study Dionne-Odom, J. Nicholas Ejem, Deborah Wells, Rachel Barnato, Amber E. Taylor, Richard A. Rocque, Gabrielle B. Turkman, Yasemin E. Kenny, Matthew Ivankova, Nataliya V. Bakitas, Marie A. Martin, Michelle Y. PLoS One Research Article AIMS: Numerous healthcare decisions are faced by persons with advanced cancer from diagnosis to end-of-life. The family caregiver role in these decisions has focused on being a surrogate decision-maker, however, little is known about the caregiver’s role in supporting upstream patient decision-making. We aimed to describe the roles of family caregivers in assisting community-dwelling advanced cancer patients with healthcare decision-making across settings and contexts. METHODS: Qualitative study using one-on-one, semi-structured interviews with community-dwelling persons with metastatic cancer (n = 18) and their family caregivers (n = 20) recruited from outpatient oncology clinics of a large tertiary care academic medical center, between October 2016 and October 2017. Transcribed interviews were analyzed using a thematic analysis approach. FINDINGS: Caregivers averaged 56 years and were mostly female (95%), white (85%), and the patient’s partner/spouse (70%). Patients averaged 58 years and were mostly male (67%) in self-reported “fair” or “poor” health (50%) with genitourinary (33%), lung (17%), and hematologic (17%) cancers. Themes describing family member roles in supporting patients’ upstream healthcare decision-making were: 1) seeking information about the cancer, its trajectory, and treatments options; 2) ensuring family and healthcare clinicians have a common understanding of the patient’s treatment plan and condition; 3) facilitating discussions with patients about their values and the framing of their illness; 5) posing “what if” scenarios about current and potential future health states and treatments; 6) addressing collateral decisions (e.g., work arrangements) resulting from medical treatment choices; 6) originating healthcare-related decision points, including decisions about seeking emergency care; and 7) making healthcare decisions for patients who preferred to delegate healthcare decisions to their family caregivers. CONCLUSIONS: These findings highlight a previously unreported and understudied set of critical decision partnering roles that cancer family caregivers play in patient healthcare decision-making. Optimizing these roles may represent novel targets for early decision support interventions for family caregivers. Public Library of Science 2019-03-13 /pmc/articles/PMC6415885/ /pubmed/30865681 http://dx.doi.org/10.1371/journal.pone.0212967 Text en © 2019 Dionne-Odom et al http://creativecommons.org/licenses/by/4.0/ This is an open access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/) , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. |
spellingShingle | Research Article Dionne-Odom, J. Nicholas Ejem, Deborah Wells, Rachel Barnato, Amber E. Taylor, Richard A. Rocque, Gabrielle B. Turkman, Yasemin E. Kenny, Matthew Ivankova, Nataliya V. Bakitas, Marie A. Martin, Michelle Y. How family caregivers of persons with advanced cancer assist with upstream healthcare decision-making: A qualitative study |
title | How family caregivers of persons with advanced cancer assist with upstream healthcare decision-making: A qualitative study |
title_full | How family caregivers of persons with advanced cancer assist with upstream healthcare decision-making: A qualitative study |
title_fullStr | How family caregivers of persons with advanced cancer assist with upstream healthcare decision-making: A qualitative study |
title_full_unstemmed | How family caregivers of persons with advanced cancer assist with upstream healthcare decision-making: A qualitative study |
title_short | How family caregivers of persons with advanced cancer assist with upstream healthcare decision-making: A qualitative study |
title_sort | how family caregivers of persons with advanced cancer assist with upstream healthcare decision-making: a qualitative study |
topic | Research Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6415885/ https://www.ncbi.nlm.nih.gov/pubmed/30865681 http://dx.doi.org/10.1371/journal.pone.0212967 |
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