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Family caregiver roles and challenges in assisting patients with cancer treatment decision‐making: Analysis of data from a national survey

BACKGROUND: We aimed to describe the roles and challenges of family caregivers involved in patients' cancer treatment decision‐making. METHODS: Family caregiver‐reported data were analyzed from a national survey conducted in the United States by CancerCare® (2/2021–7/2021). Four select‐all‐that...

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Autores principales: Dionne‐Odom, James N., Kent, Erin E., Rocque, Gabrielle B., Azuero, Andres, Harrell, Erin R., Gazaway, Shena, Reed, Rhiannon D., Bratches, Reed W., Bechthold, Avery C., Lee, Kyungmi, Puga, Frank, Miller‐Sonet, Ellen, Ornstein, Katherine A.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10485321/
https://www.ncbi.nlm.nih.gov/pubmed/37394734
http://dx.doi.org/10.1111/hex.13805
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author Dionne‐Odom, James N.
Kent, Erin E.
Rocque, Gabrielle B.
Azuero, Andres
Harrell, Erin R.
Gazaway, Shena
Reed, Rhiannon D.
Bratches, Reed W.
Bechthold, Avery C.
Lee, Kyungmi
Puga, Frank
Miller‐Sonet, Ellen
Ornstein, Katherine A.
author_facet Dionne‐Odom, James N.
Kent, Erin E.
Rocque, Gabrielle B.
Azuero, Andres
Harrell, Erin R.
Gazaway, Shena
Reed, Rhiannon D.
Bratches, Reed W.
Bechthold, Avery C.
Lee, Kyungmi
Puga, Frank
Miller‐Sonet, Ellen
Ornstein, Katherine A.
author_sort Dionne‐Odom, James N.
collection PubMed
description BACKGROUND: We aimed to describe the roles and challenges of family caregivers involved in patients' cancer treatment decision‐making. METHODS: Family caregiver‐reported data were analyzed from a national survey conducted in the United States by CancerCare® (2/2021–7/2021). Four select‐all‐that‐apply caregiver roles were explored: (1) observer (patient as primary decision‐maker); (2) primary decision‐maker; (3) shared decision‐maker with patient and (4) decision delegated to healthcare team. Roles were compared across five treatment decisions: where to get treatment, the treatment plan, second opinions, beginning treatment and stopping treatment. Ten challenges faced by caregivers (e.g., information, cost, treatment understanding) were then examined. χ (2) and regression analyses were used to assess associations between roles, decision areas, challenges and caregiver sociodemographics. RESULTS: Of 2703 caregiver respondents, 87.6% reported involvement in patient decisions about cancer treatment, including 1661 who responded to a subsection further detailing their roles and challenges with specific treatment decisions. Amongst these 1661 caregivers, 22.2% reported an observing role, 21.3% a primary decision‐making role, 53.9% a shared decision‐making role and 18.1% a role delegating decisions to the healthcare team. Most caregivers (60.4%) faced ≥1 challenge, the most frequent being not knowing how treatments would affect the patient's physical condition (24.8%) and quality of life (23.2%). In multivariable models, being Hispanic/Latino/a was the strongest predictor of facing at least one challenge (b = −0.581, Wald = 10.69, p < .01). CONCLUSIONS: Most caregivers were involved in patients' cancer treatment decisions. The major challenge was not understanding how treatments would impact patients' physical health and quality of life. Challenges may be more commonly faced by Hispanic/Latino/a caregivers. PATIENT OR PUBLIC CONTRIBUTION: The CancerCare® survey was developed in partnership with caregiving services and research experts to describe the role of cancer family caregivers in patient decision‐making and assess their needs for support. All survey items were reviewed by a CancerCare advisory board that included five professional patient advocates and piloted by a CancerCare social worker and other staff who provide counselling to cancer caregivers.
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spelling pubmed-104853212023-09-09 Family caregiver roles and challenges in assisting patients with cancer treatment decision‐making: Analysis of data from a national survey Dionne‐Odom, James N. Kent, Erin E. Rocque, Gabrielle B. Azuero, Andres Harrell, Erin R. Gazaway, Shena Reed, Rhiannon D. Bratches, Reed W. Bechthold, Avery C. Lee, Kyungmi Puga, Frank Miller‐Sonet, Ellen Ornstein, Katherine A. Health Expect Original Articles BACKGROUND: We aimed to describe the roles and challenges of family caregivers involved in patients' cancer treatment decision‐making. METHODS: Family caregiver‐reported data were analyzed from a national survey conducted in the United States by CancerCare® (2/2021–7/2021). Four select‐all‐that‐apply caregiver roles were explored: (1) observer (patient as primary decision‐maker); (2) primary decision‐maker; (3) shared decision‐maker with patient and (4) decision delegated to healthcare team. Roles were compared across five treatment decisions: where to get treatment, the treatment plan, second opinions, beginning treatment and stopping treatment. Ten challenges faced by caregivers (e.g., information, cost, treatment understanding) were then examined. χ (2) and regression analyses were used to assess associations between roles, decision areas, challenges and caregiver sociodemographics. RESULTS: Of 2703 caregiver respondents, 87.6% reported involvement in patient decisions about cancer treatment, including 1661 who responded to a subsection further detailing their roles and challenges with specific treatment decisions. Amongst these 1661 caregivers, 22.2% reported an observing role, 21.3% a primary decision‐making role, 53.9% a shared decision‐making role and 18.1% a role delegating decisions to the healthcare team. Most caregivers (60.4%) faced ≥1 challenge, the most frequent being not knowing how treatments would affect the patient's physical condition (24.8%) and quality of life (23.2%). In multivariable models, being Hispanic/Latino/a was the strongest predictor of facing at least one challenge (b = −0.581, Wald = 10.69, p < .01). CONCLUSIONS: Most caregivers were involved in patients' cancer treatment decisions. The major challenge was not understanding how treatments would impact patients' physical health and quality of life. Challenges may be more commonly faced by Hispanic/Latino/a caregivers. PATIENT OR PUBLIC CONTRIBUTION: The CancerCare® survey was developed in partnership with caregiving services and research experts to describe the role of cancer family caregivers in patient decision‐making and assess their needs for support. All survey items were reviewed by a CancerCare advisory board that included five professional patient advocates and piloted by a CancerCare social worker and other staff who provide counselling to cancer caregivers. John Wiley and Sons Inc. 2023-07-02 /pmc/articles/PMC10485321/ /pubmed/37394734 http://dx.doi.org/10.1111/hex.13805 Text en © 2023 The Authors. Health Expectations published by John Wiley & Sons Ltd. https://creativecommons.org/licenses/by/4.0/This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
spellingShingle Original Articles
Dionne‐Odom, James N.
Kent, Erin E.
Rocque, Gabrielle B.
Azuero, Andres
Harrell, Erin R.
Gazaway, Shena
Reed, Rhiannon D.
Bratches, Reed W.
Bechthold, Avery C.
Lee, Kyungmi
Puga, Frank
Miller‐Sonet, Ellen
Ornstein, Katherine A.
Family caregiver roles and challenges in assisting patients with cancer treatment decision‐making: Analysis of data from a national survey
title Family caregiver roles and challenges in assisting patients with cancer treatment decision‐making: Analysis of data from a national survey
title_full Family caregiver roles and challenges in assisting patients with cancer treatment decision‐making: Analysis of data from a national survey
title_fullStr Family caregiver roles and challenges in assisting patients with cancer treatment decision‐making: Analysis of data from a national survey
title_full_unstemmed Family caregiver roles and challenges in assisting patients with cancer treatment decision‐making: Analysis of data from a national survey
title_short Family caregiver roles and challenges in assisting patients with cancer treatment decision‐making: Analysis of data from a national survey
title_sort family caregiver roles and challenges in assisting patients with cancer treatment decision‐making: analysis of data from a national survey
topic Original Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10485321/
https://www.ncbi.nlm.nih.gov/pubmed/37394734
http://dx.doi.org/10.1111/hex.13805
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