Kim Mooney-Doyle, Kathleen A Knafl, Liming Huang, Gwenyth R Wallen, Connie M Ulrich
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引用次数: 0
Abstract
Background: To advance oncology treatment for adults, comprehensive understanding of how and why people decide to enroll in, remain in, and withdraw from cancer clinical trials is needed. While quantitative findings provide insights into these benefits and burdens, they provide limited understanding of how adults with cancer appraise their situation and approach decisions to undertake a clinical trial. The goal of this mixed methods analysis was to conceptualize participants' assessment of benefits and burdens related to cancer clinical trial participation.
Materials and methods: This sub-group analysis of 21 participants was part of a larger sequential, explanatory mixed methods study. We used Creamer's integrated approach to linking quantitative and qualitative data to assess convergence, with qualitative data explaining quantitative results. Participants were grouped into four categories based on quantitative benefit/burden scores and thematic analysis of their qualitative data was used to describe these categories.
Results: Across groups participants varied in descriptions of benefits and burdens of cancer clinical trial participation and reasons for participating. Those reporting high benefit/low burden described "seizing the opportunity to participate;" those reporting low benefit/low burden described "taking responsibility" through trial participation; those reporting low benefit/high burden described how they were "willing to endure," and those with high benefit/high burden emphasized "deciding to act."
Conclusions: Participants' qualitative descriptions of benefits and burdens were more nuanced and dynamic than reflected in their quantitative ratings. Thus, current measures may be missing important concepts, such as logistic challenges of trial participation. Our results have implications for consenting procedures and decisional support guidance offered to patients and their caregivers.
期刊介绍：
Here is your single source of integrated information on providing the best psychosocial care possible from the knowledge available from many disciplines.The Journal of Psychosocial Oncology is an essential source for up-to-date clinical and research material geared toward health professionals who provide psychosocial services to cancer patients, their families, and their caregivers. The journal—the first interdisciplinary resource of its kind—is in its third decade of examining exploratory and hypothesis testing and presenting program evaluation research on critical areas, including: the stigma of cancer; employment and personal problems facing cancer patients; patient education.
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