RESEARCH ARTICLE

Open Access

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

Janine Cerutti

orcid.org/0000-0002-9280-4406

Department of Psychological Science, The University of Vermont, Burlington, Vermont, USA

University of Vermont Cancer Center, University of Vermont, Burlington, Vermont, USA

Contribution: Data curation (supporting), Formal analysis (lead), Methodology (equal), Writing - original draft (lead), Writing - review & editing (equal)

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Maria C. Lent,

Maria C. Lent

Department of Psychological Science, The University of Vermont, Burlington, Vermont, USA

University of Vermont Cancer Center, University of Vermont, Burlington, Vermont, USA

Contribution: Conceptualization (equal), Data curation (lead), Methodology (equal), Project administration (lead), Writing - review & editing (equal)

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Randall F. Holcombe,

Randall F. Holcombe

orcid.org/0000-0002-7417-0390

University of Vermont Cancer Center, University of Vermont, Burlington, Vermont, USA

Contribution: Conceptualization (equal), Formal analysis (supporting), Funding acquisition (lead), Methodology (equal), Writing - review & editing (equal)

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Maija Reblin,

Corresponding Author

Maija Reblin

[email protected]

orcid.org/0000-0003-3108-465X

University of Vermont Cancer Center, University of Vermont, Burlington, Vermont, USA

Larner College of Medicine, University of Vermont, Burlington, Vermont, USA

Correspondence:

Maija Reblin ([email protected])

Contribution: Conceptualization (equal), Formal analysis (supporting), Methodology (equal), Writing - review & editing (equal)

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Janine Cerutti,

Janine Cerutti

orcid.org/0000-0002-9280-4406

Department of Psychological Science, The University of Vermont, Burlington, Vermont, USA

University of Vermont Cancer Center, University of Vermont, Burlington, Vermont, USA

Contribution: Data curation (supporting), Formal analysis (lead), Methodology (equal), Writing - original draft (lead), Writing - review & editing (equal)

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Maria C. Lent,

Maria C. Lent

Department of Psychological Science, The University of Vermont, Burlington, Vermont, USA

University of Vermont Cancer Center, University of Vermont, Burlington, Vermont, USA

Contribution: Conceptualization (equal), Data curation (lead), Methodology (equal), Project administration (lead), Writing - review & editing (equal)

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Randall F. Holcombe,

Randall F. Holcombe

orcid.org/0000-0002-7417-0390

University of Vermont Cancer Center, University of Vermont, Burlington, Vermont, USA

Contribution: Conceptualization (equal), Formal analysis (supporting), Funding acquisition (lead), Methodology (equal), Writing - review & editing (equal)

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Maija Reblin,

Corresponding Author

Maija Reblin

[email protected]

orcid.org/0000-0003-3108-465X

University of Vermont Cancer Center, University of Vermont, Burlington, Vermont, USA

Larner College of Medicine, University of Vermont, Burlington, Vermont, USA

Correspondence:

Maija Reblin ([email protected])

Contribution: Conceptualization (equal), Formal analysis (supporting), Methodology (equal), Writing - review & editing (equal)

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First published: 09 January 2025

https://doi.org/10.1002/cam4.70488

Funding: This work was supported by the University of Vermont Cancer Center.

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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.

Conflicts of Interest

The authors declare no conflicts of interest.

Open Research

Data Availability Statement

The data are not publicly available due to privacy or ethical restrictions.

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Volume14, Issue1

January 2025

e70488

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

ABSTRACT

Objective

Methods

Results

Conclusion

Conflicts of Interest

Open Research

Data Availability Statement

References

Figures

References

Information

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

ABSTRACT

Objective

Methods

Results

Conclusion

Conflicts of Interest

Open Research

Data Availability Statement

References

Figures

References

Related

Information