Patient and Caregiver Perceptions of Caregiving Contributions During Cancer Clinical Trials: A Mixed‐Methods Study

ABSTRACT Objective Caregivers play crucial roles in cancer treatment and outcomes. However, little is known regarding how caregivers support patients during cancer clinical trials. The aim of this study was to gain insight into the caregiver experience of rural and urban patients enrolled in cancer...

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Main Authors: Janine Cerutti, Maria C. Lent, Randall F. Holcombe, Maija Reblin
Format: Article
Language:English
Published: Wiley 2025-01-01
Series:Cancer Medicine
Subjects:
Online Access:https://doi.org/10.1002/cam4.70488
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author Janine Cerutti
Maria C. Lent
Randall F. Holcombe
Maija Reblin
author_facet Janine Cerutti
Maria C. Lent
Randall F. Holcombe
Maija Reblin
author_sort Janine Cerutti
collection DOAJ
description ABSTRACT Objective Caregivers play crucial roles in cancer treatment and outcomes. However, little is known regarding how caregivers support patients during cancer clinical trials. The aim of this study was to gain insight into the caregiver experience of rural and urban patients enrolled in cancer clinical trials. Methods As part of a quality improvement study, 21 patient–caregiver dyads were interviewed using closed and open‐ended interview questions. We analyzed quantitative and qualitative data on patient and caregiver perceptions of caregiver contributions and explored differences in the reported caregiving experience between rural and urban participants. Results While patient–caregiver dyads showed significant disagreement in the symptoms/medication management domain, with caregivers tending to acknowledge the contribution while patients did not (χ2 (1, 21) = 5.82, p = 0.016), both groups generally showed agreement in their perceptions of caregiver involvement and reported similar levels of involvement across the other six assessed domains. Qualitative analysis revealed three themes: patient independence, invisible support, and accepted forms of support. Despite patients valuing independence, patients benefited from caregivers' unseen support, and providing emotional support and attending appointments were widely accepted forms of support among patients. No meaningful differences in caregiver contributions were found between rural and urban patient–caregiver dyads. Conclusion Our study revealed that caregivers are assisting patients in often unseen and underestimated ways during cancer clinical trials, highlighting their multifaceted role. Cancer clinical trials should implement a family‐centered approach, especially for rural caregivers, to enhance patient retention and outcomes.
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spelling doaj-art-3d446704a01846548cd5d66e1e0a903e2025-08-20T02:34:47ZengWileyCancer Medicine2045-76342025-01-01141n/an/a10.1002/cam4.70488Patient and Caregiver Perceptions of Caregiving Contributions During Cancer Clinical Trials: A Mixed‐Methods StudyJanine Cerutti0Maria C. Lent1Randall F. Holcombe2Maija Reblin3Department of Psychological Science The University of Vermont Burlington Vermont USADepartment of Psychological Science The University of Vermont Burlington Vermont USAUniversity of Vermont Cancer Center University of Vermont Burlington Vermont USAUniversity of Vermont Cancer Center University of Vermont Burlington Vermont USAABSTRACT Objective Caregivers play crucial roles in cancer treatment and outcomes. However, little is known regarding how caregivers support patients during cancer clinical trials. The aim of this study was to gain insight into the caregiver experience of rural and urban patients enrolled in cancer clinical trials. Methods As part of a quality improvement study, 21 patient–caregiver dyads were interviewed using closed and open‐ended interview questions. We analyzed quantitative and qualitative data on patient and caregiver perceptions of caregiver contributions and explored differences in the reported caregiving experience between rural and urban participants. Results While patient–caregiver dyads showed significant disagreement in the symptoms/medication management domain, with caregivers tending to acknowledge the contribution while patients did not (χ2 (1, 21) = 5.82, p = 0.016), both groups generally showed agreement in their perceptions of caregiver involvement and reported similar levels of involvement across the other six assessed domains. Qualitative analysis revealed three themes: patient independence, invisible support, and accepted forms of support. Despite patients valuing independence, patients benefited from caregivers' unseen support, and providing emotional support and attending appointments were widely accepted forms of support among patients. No meaningful differences in caregiver contributions were found between rural and urban patient–caregiver dyads. Conclusion Our study revealed that caregivers are assisting patients in often unseen and underestimated ways during cancer clinical trials, highlighting their multifaceted role. Cancer clinical trials should implement a family‐centered approach, especially for rural caregivers, to enhance patient retention and outcomes.https://doi.org/10.1002/cam4.70488cancercaregiversclinical trialmixed methodsoncologyqualitative research
spellingShingle Janine Cerutti
Maria C. Lent
Randall F. Holcombe
Maija Reblin
Patient and Caregiver Perceptions of Caregiving Contributions During Cancer Clinical Trials: A Mixed‐Methods Study
Cancer Medicine
cancer
caregivers
clinical trial
mixed methods
oncology
qualitative research
title Patient and Caregiver Perceptions of Caregiving Contributions During Cancer Clinical Trials: A Mixed‐Methods Study
title_full Patient and Caregiver Perceptions of Caregiving Contributions During Cancer Clinical Trials: A Mixed‐Methods Study
title_fullStr Patient and Caregiver Perceptions of Caregiving Contributions During Cancer Clinical Trials: A Mixed‐Methods Study
title_full_unstemmed Patient and Caregiver Perceptions of Caregiving Contributions During Cancer Clinical Trials: A Mixed‐Methods Study
title_short Patient and Caregiver Perceptions of Caregiving Contributions During Cancer Clinical Trials: A Mixed‐Methods Study
title_sort patient and caregiver perceptions of caregiving contributions during cancer clinical trials a mixed methods study
topic cancer
caregivers
clinical trial
mixed methods
oncology
qualitative research
url https://doi.org/10.1002/cam4.70488
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AT mariaclent patientandcaregiverperceptionsofcaregivingcontributionsduringcancerclinicaltrialsamixedmethodsstudy
AT randallfholcombe patientandcaregiverperceptionsofcaregivingcontributionsduringcancerclinicaltrialsamixedmethodsstudy
AT maijareblin patientandcaregiverperceptionsofcaregivingcontributionsduringcancerclinicaltrialsamixedmethodsstudy