More than Medical Records: Uncovering how Childhood Cancer Survivors learn about and interact with their Cancer Histories.

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Abstract/Contents

Abstract
From 1971 to 2010 the combined 5-year childhood cancer survival rate has increased from 40 percent to 82 percent (Cancer Research UK, 2015). With more children surviving cancer, more adults will live with the long-term effects of cancer treatments. 70 percent of childhood cancer survivors (CCS) are at risk of physical, psychological, and social late effects of treatment and 66 percent reported living with at least one chronic health condition 30 years post diagnosis (Hewitt, Weiner, & Simone, 2003). Amplifying the likelihood of poor health outcomes, CCS with limited access to their health histories have greater risk for poor health outcomes (Hóven, Lannering, Gustaffson, & Bownman, 2018). To limit some of this risk for poor health outcomes and to properly manage their healthcare, CCS need access to their health histories. Despite the importance for survivors to understand their health histories, research neglects to explore how CCS learn about and interact with their cancer histories as young adults. To fill this gap in the literature I interviewed 9 CCS between the ages of 18 and 29 that were treated for cancer at 10 years of age or younger. With these interviews I conducted a content analysis to identify common themes. I present how CCS learned about and continue to learn about their cancer histories. CCS reported using the following resources to learn about their cancer histories: parents, healthcare professionals knowledgeable of their cancer histories, scientific literature, summer camps for CCS, and survivor clinics. Although participants each reported using some of these resources, many of them still have questions about their cancer histories and relevant long-term effects. CCS interact with their cancer histories through feelings of uncertainty, fearing long-term side effects, feeling fortunate for good health, and feeling guilty for their limited knowledge of their cancer histories. The research reveals needed improvements in health education programs for CCS.

Description

Type of resource text
Date created [ca. January 2019] - June 1, 2019

Creators/Contributors

Author Elle Billman
Primary advisor Dr. Lochlann S. Jain
Advisor Dr. Kyoko Sato
Degree granting institution Stanford University, department of Science, Technology and Society

Subjects

Subject Childhood cancer survivor
Subject cancer
Subject survivor
Subject cancer histories
Subject cancer narratives
Subject Science Technology and Society
Subject Stanford University
Genre Thesis

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User agrees that, where applicable, content will not be used to identify or to otherwise infringe the privacy or confidentiality rights of individuals. Content distributed via the Stanford Digital Repository may be subject to additional license and use restrictions applied by the depositor.
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This work is licensed under a Creative Commons Attribution 3.0 Unported license (CC BY).

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Preferred Citation
Billman, Elle. (2019). More than Medical Records: Uncovering how Childhood Cancer Survivors learn about and interact with their Cancer Histories. Unpublished Honors Thesis. Stanford University, Stanford CA.

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Stanford University, Program in Science, Technology and Society, Honors Theses

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