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At the Heart of It All: Emotions of Consequence for the Conceptualization of Caregiver-Reported Outcomes in the Context of Colorectal Cancer

Colorectal cancer (CRC) can be demanding for primary caregivers; yet, there is insufficient evidence describing the caregiver-reported outcomes (CROs) that matter most to caregivers. CROs refer to caregivers’ assessments of their own health status as a result of supporting a patient. The study purpo...

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Autores principales: Howard, A. Fuchsia, Lynch, Kelsey, Beck, Scott, Torrejón, Maria-José, Avery, Jonathan, Thorne, Sally, Porcino, Antony, De Vera, Mary, Lambert, Leah, Wolff, Angela, McDonald, Melanie, Lee, Joyce, Hedges, Penelope, McKenzie, Michael
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8534905/
https://www.ncbi.nlm.nih.gov/pubmed/34677273
http://dx.doi.org/10.3390/curroncol28050355
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author Howard, A. Fuchsia
Lynch, Kelsey
Beck, Scott
Torrejón, Maria-José
Avery, Jonathan
Thorne, Sally
Porcino, Antony
De Vera, Mary
Lambert, Leah
Wolff, Angela
McDonald, Melanie
Lee, Joyce
Hedges, Penelope
McKenzie, Michael
author_facet Howard, A. Fuchsia
Lynch, Kelsey
Beck, Scott
Torrejón, Maria-José
Avery, Jonathan
Thorne, Sally
Porcino, Antony
De Vera, Mary
Lambert, Leah
Wolff, Angela
McDonald, Melanie
Lee, Joyce
Hedges, Penelope
McKenzie, Michael
author_sort Howard, A. Fuchsia
collection PubMed
description Colorectal cancer (CRC) can be demanding for primary caregivers; yet, there is insufficient evidence describing the caregiver-reported outcomes (CROs) that matter most to caregivers. CROs refer to caregivers’ assessments of their own health status as a result of supporting a patient. The study purpose was to describe the emotions that were most impactful to caregivers of patients with CRC, and how the importance caregivers attribute to these emotions changed from diagnosis throughout treatment. Guided by qualitative Interpretive Description, we analyzed 25 caregiver and 37 CRC patient interviews, either as individuals or as caregiver-patient dyads (six interviews), using inductive coding and constant comparative techniques. We found that the emotional aspect of caring for a patient with CRC was at the heart of caregiving. Caregiver experiences that engendered emotions of consequence included: (1) facing the patient’s life-changing diagnosis and an uncertain future, (2) needing to be with the patient throughout the never-ending nightmare of treatment, (3) bearing witness to patient suffering, (4) being worn down by unrelenting caregiver responsibilities, (5) navigating their relationship, and (6) enduring unwanted change. The broad range of emotions important to caregivers contributes to comprehensive foundational evidence for future conceptualization and the use of CROs.
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spelling pubmed-85349052021-10-23 At the Heart of It All: Emotions of Consequence for the Conceptualization of Caregiver-Reported Outcomes in the Context of Colorectal Cancer Howard, A. Fuchsia Lynch, Kelsey Beck, Scott Torrejón, Maria-José Avery, Jonathan Thorne, Sally Porcino, Antony De Vera, Mary Lambert, Leah Wolff, Angela McDonald, Melanie Lee, Joyce Hedges, Penelope McKenzie, Michael Curr Oncol Article Colorectal cancer (CRC) can be demanding for primary caregivers; yet, there is insufficient evidence describing the caregiver-reported outcomes (CROs) that matter most to caregivers. CROs refer to caregivers’ assessments of their own health status as a result of supporting a patient. The study purpose was to describe the emotions that were most impactful to caregivers of patients with CRC, and how the importance caregivers attribute to these emotions changed from diagnosis throughout treatment. Guided by qualitative Interpretive Description, we analyzed 25 caregiver and 37 CRC patient interviews, either as individuals or as caregiver-patient dyads (six interviews), using inductive coding and constant comparative techniques. We found that the emotional aspect of caring for a patient with CRC was at the heart of caregiving. Caregiver experiences that engendered emotions of consequence included: (1) facing the patient’s life-changing diagnosis and an uncertain future, (2) needing to be with the patient throughout the never-ending nightmare of treatment, (3) bearing witness to patient suffering, (4) being worn down by unrelenting caregiver responsibilities, (5) navigating their relationship, and (6) enduring unwanted change. The broad range of emotions important to caregivers contributes to comprehensive foundational evidence for future conceptualization and the use of CROs. MDPI 2021-10-16 /pmc/articles/PMC8534905/ /pubmed/34677273 http://dx.doi.org/10.3390/curroncol28050355 Text en © 2021 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Howard, A. Fuchsia
Lynch, Kelsey
Beck, Scott
Torrejón, Maria-José
Avery, Jonathan
Thorne, Sally
Porcino, Antony
De Vera, Mary
Lambert, Leah
Wolff, Angela
McDonald, Melanie
Lee, Joyce
Hedges, Penelope
McKenzie, Michael
At the Heart of It All: Emotions of Consequence for the Conceptualization of Caregiver-Reported Outcomes in the Context of Colorectal Cancer
title At the Heart of It All: Emotions of Consequence for the Conceptualization of Caregiver-Reported Outcomes in the Context of Colorectal Cancer
title_full At the Heart of It All: Emotions of Consequence for the Conceptualization of Caregiver-Reported Outcomes in the Context of Colorectal Cancer
title_fullStr At the Heart of It All: Emotions of Consequence for the Conceptualization of Caregiver-Reported Outcomes in the Context of Colorectal Cancer
title_full_unstemmed At the Heart of It All: Emotions of Consequence for the Conceptualization of Caregiver-Reported Outcomes in the Context of Colorectal Cancer
title_short At the Heart of It All: Emotions of Consequence for the Conceptualization of Caregiver-Reported Outcomes in the Context of Colorectal Cancer
title_sort at the heart of it all: emotions of consequence for the conceptualization of caregiver-reported outcomes in the context of colorectal cancer
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8534905/
https://www.ncbi.nlm.nih.gov/pubmed/34677273
http://dx.doi.org/10.3390/curroncol28050355
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