Disclosure Experiences of Cancer Survivors Who are in College

Includes bibliographical references (pages 41-45).As a result of major advancements in treatment, an unprecedented number of children are surviving cancer and living well into adulthood. Long-term survival, however, brings unique psychosocial issues, such as cancer survivors' decision to disclose their cancer history with others. The aim of this study was to take a qualitative approach to explore the disclosure decisions and experiences of cancer survivors who are in college. Since disclosure of a personal history with cancer is an unexplored topic among college students, we sought to gather descriptive information about disclosure and important related constructs, such as identity development and belongingness. Study participants were recruited through a California-based cancer survivor scholarship program and by a nation-wide distribution of a study flyer to cancer- and college-related venues, list-serves, websites, and social media. Twelve undergraduate college students with a personal history of cancer, age 18 - 30 years, took part in a one-on-one, semi-structured interview conducted via video chat. The sample consisted of five men and seven women. The amount of time elapsed between cancer diagnosis and study interview ranged from 6 months to 20 years. Most of the participants had a type of leukemia or lymphoma. Other cancers were brain cancer, carcinoma of the tongue, dysgerminoma, and endodermal sinus tumor. The average duration of the interviews was 77 minutes. Participants were asked open-ended questions concerning their decision to disclose and perceptions of others' reactions to their disclosure around the time of their diagnosis, during treatment, post-treatment survivorship, return to K-12 grade schooling, and college. Participants were also asked questions about changes to physical appearance, late effects due to their cancer treatment, adjustment to college, cancer-survivor identity, and relationships with peers. The data were organized and analyzed using Dedoose, Version 4.5 Web Application for Managing, Analyzing, and Presenting Qualitative and Mixed Method Data. Guided by Consensual Qualitative Research recommendations, recurrent themes and categories were identified using inductive, data-driven analysis. Due to the great diversity of personal experiences, information saturation has yet to be reached for all topics. Four domains were identified: (1) voluntary disclosure across time (i.e., diagnosis, treatment, post-treatment survivorship, return to K-12 schooling, and college), (2) cancer-survivor-related identity development, (3) belongingness and connecting to peers, and (4) advice to other young cancer survivors about disclosure. Future directions include recruiting more participants in an effort to reach information saturation and to revisit data analysis. Preliminary findings suggest several testable hypotheses for future research. Final findings will have the potential to inform the development of a needed measure of cancer-related disclosure and will provide insights for targeted intervention development