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To share or not to share: communication of caregiver-reported outcomes when a patient has colorectal cancer Howard, A. Fuchsia; Torrejón, Maria; Lynch, Kelsey; Beck, Scott M.; Thorne, Sally E. (Sally Elizabeth), 1951-; Lambert, Leah Kimberley; Porcino, Antony Joseph; De Vera, Mary; Davies, Janine; Avery, Jonathan; Wolff, Angela C.; McDonald, Melanie; Lee, Joyce W. K.; Hedges, Penelope; Kelly, Mary T.; McKenzie, Michael

Abstract

Background The importance of patient-centered measurement in cancer care has led to recognition of the potential for caregiver-reported outcomes to improve caregiver, patient and healthcare system outcomes. Yet, there is limited evidence to inform caregiver-reported outcome implementation. Our purpose was to generate evidence to inform the meaningful and constructive integration of caregiver-reported outcomes into cancer care to benefit caregivers, including exploration of the question of the extent to which these assessments should be shared with patients. We focused on caregivers of patients with colorectal cancer (CRC) because CRC is common, and associated caregiving can be complex. Results From our Interpretive Description analysis of qualitative interview data from 78 participants (25 caregivers, 37 patients, and 16 healthcare providers [HCPs]), we identified contrasting perspectives about the sharing of caregiver-reported outcome assessments with patients with CRC. Those who preferred open communication with both the patient and caregiver present considered this essential for supporting the caregiver. The participants who preferred private communication without the patient, cited concern about caregiver- and patient-burden and guilt. Recognizing these perspectives, HCPs described strategies used to navigate sensitivities inherent in preferences for open versus private communication. Conclusions The integration of caregiver-reported outcomes into cancer care will require careful consideration of caregiver and patient preferences regarding the communication of caregiver assessments to prevent additional burden.

Item Metadata

Title
To share or not to share: communication of caregiver-reported outcomes when a patient has colorectal cancer
Creator
Howard, A. Fuchsia; Torrejón, Maria; Lynch, Kelsey; Beck, Scott M.; Thorne, Sally E. (Sally Elizabeth), 1951-; Lambert, Leah Kimberley; Porcino, Antony Joseph; De Vera, Mary; Davies, Janine; Avery, Jonathan; Wolff, Angela C.; McDonald, Melanie; Lee, Joyce W. K.; Hedges, Penelope; Kelly, Mary T.; McKenzie, Michael
Contributor
BC Cancer Agency
Publisher
Springer International Publishing
Date Issued
2022-02-05
Description
Background The importance of patient-centered measurement in cancer care has led to recognition of the potential for caregiver-reported outcomes to improve caregiver, patient and healthcare system outcomes. Yet, there is limited evidence to inform caregiver-reported outcome implementation. Our purpose was to generate evidence to inform the meaningful and constructive integration of caregiver-reported outcomes into cancer care to benefit caregivers, including exploration of the question of the extent to which these assessments should be shared with patients. We focused on caregivers of patients with colorectal cancer (CRC) because CRC is common, and associated caregiving can be complex. Results From our Interpretive Description analysis of qualitative interview data from 78 participants (25 caregivers, 37 patients, and 16 healthcare providers [HCPs]), we identified contrasting perspectives about the sharing of caregiver-reported outcome assessments with patients with CRC. Those who preferred open communication with both the patient and caregiver present considered this essential for supporting the caregiver. The participants who preferred private communication without the patient, cited concern about caregiver- and patient-burden and guilt. Recognizing these perspectives, HCPs described strategies used to navigate sensitivities inherent in preferences for open versus private communication. Conclusions The integration of caregiver-reported outcomes into cancer care will require careful consideration of caregiver and patient preferences regarding the communication of caregiver assessments to prevent additional burden.
Subject
Caregiver; Family; Oncology; Colorectal cancer; Caregiver-reported outcomes; Measurement; Supportive care; Psychosocial; Qualitative research; Interpretive description
Genre
Article
Type
Text
Language
eng
Date Available
2022-03-01
Provider
Vancouver : University of British Columbia Library
Rights
Attribution 4.0 International (CC BY 4.0)
DOI
10.14288/1.0406672
URI
http://hdl.handle.net/2429/80894
Affiliation
Applied Science, Faculty of; Medicine, Faculty of; Pharmaceutical Sciences, Faculty of; Non UBC; Medicine, Department of; Nursing, School of
Citation
Journal of Patient-Reported Outcomes. 2022 Feb 05;6(1):13
Publisher DOI
10.1186/s41687-022-00418-1
Peer Review Status
Reviewed
Scholarly Level
Faculty; Researcher
Copyright Holder
The Author(s)
Rights URI
http://creativecommons.org/licenses/by/4.0/
Aggregated Source Repository
DSpace

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Rights

Attribution 4.0 International (CC BY 4.0)