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Privacy Issues in Young Onset Colorectal Cancer Patients and Survivors

Indiana University-Purdue University Indianapolis (IUPUI) / The occurrence of colorectal cancer among those over the age of 50 is decreasing;
conversely, the rate of diagnosis for those under 50 years old is increasing. While medical
researchers scramble to identify the cause for this increase, young onset colorectal cancer
(YOCC) patients and survivors are left to navigate a new normal. This new normal often
includes awkward and troublesome concerns such as scarring, colostomy bags, and bowel
problems. Contrary to those diagnosed with colorectal cancer later in life, those that are
diagnosed at a younger age are forced to deal with these issues for many years.
The purpose of this exploratory study was to identify privacy issues surrounding
YOCC. Because of the significant increase in diagnoses, YOCC is now being researched
independently from colorectal cancer in general. The topic of privacy has been
researched in academic disciplines, including medicine. Privacy issues surrounding
cancer have been researched, as well. Yet, the topic of privacy concerns facing YOCC
patients/survivors has been overlooked. It is important to identify privacy concerns
specific to YOCC patients/survivors as the information could help health care providers,
communication scholars, and caregivers.
Patient narratives were analyzed employing thematic analysis to identify privacy
concerns of YOCC patients/survivors through the lens of Communication Privacy
Management theory (CPM theory). Results indicated that participants discussed
disclosure of their YOCC journey as a process. Within this disclosure process, YOCC patients/survivors identified specific
privacy issues that influenced the way they disclosed or concealed information specific to
their illness.
There is a growing need for more research into the YOCC community due to the
increase in diagnosis rates and their unique privacy concerns. Potential topics for future
research include the impact of COVID-19, patient desire to help others, social media
influence on disclosure, how patient disclosure could impact provider training, dating
with YOCC, and specific demographic research.

Identiferoai:union.ndltd.org:IUPUI/oai:scholarworks.iupui.edu:1805/30867
Date12 1900
CreatorsHecklinski, Tiffany Marie
ContributorsLongtin, Krista, Brann, Maria, Bute, Jennifer J., Palmer, Megan M.
Source SetsIndiana University-Purdue University Indianapolis
Languageen_US
Detected LanguageEnglish
TypeDissertation

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