Designing for the Dynamic Needs of Young Adult Cancer Survivors
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Young adult cancer survivors—individuals diagnosed with cancer between the ages of 18 and 39—face health and quality of life challenges long after treatment ends. Issues survivors face include forming and maintaining relationships, coping with unemployment or lack of health insurance, and struggling with lasting cancer recurrence risk or diminished fertility. Young adult survivors must cope with all of these problems while navigating health information for cancer survivors that is often written for a much older audience, and therefore lacks relevance. This growing population of health care consumers (72,000 individuals diagnosed each year, plus an estimated 600,000 young adult cancer survivors in the U.S. as of 2012) requires a more systematic approach for meeting their needs. To enhance and expand understanding of the informational and emotional needs of young adult cancer survivors, I used a combination of qualitative research methods to elicit self-characterized experiences and needs of these survivors. Working with young adult survivors, I found that their informational and emotional needs change over time, and these changes affect survivor tasks such as finding information outside the clinic, sharing stories about treatment and survivorship, and connecting with suitable cancer peers. Young adult cancer is also a uniquely social experience versus pediatric or adult cancer; survivors face a number of social risks, such as losing friends, coping with changing family dynamics, and connecting with their oncology care teams at a vulnerable time. In addition, I reflect on the combination of qualitative methods I used with participants, and point to my future work, which employs similarly creative strategies to enhance participant engagement in research. Finally, as a result of this work, I argue that better information systems and services design can lead to three powerful benefits for the young adult cancer survivor population: (1) increased survivor engagement in managing treatment and survivorship issues; (2) more effective communication between survivors and their oncology care teams; and (3) improved health outcomes through informed decision making about treatment and survivorship issues.
- Information science