The Audacity of Engagement: Hearing Directly from Young Adults with Cancer on Their Attitudes and Perceptions of Cancer Survivorship and Cancer Survivorship Research

Catherine Benedict, David Victorson, Brad Love, Dave Fuehrer, Allison Lazard, Adam J. Saffer, Thea Linscott, Matthew Zachary

Research output: Contribution to journalArticle

5 Scopus citations

Abstract

Background: Young adult (YA) cancer survivors have been historically under-represented in cancer survivorship research, which has contributed to more disparate health outcomes compared with young and older cancer survivors. Using qualitative methods, this study explored YAs' perceptions of cancer survivorship and identified YA-specific barriers and preferences for participation in cancer survivorship research. Methods: Individual interviews and focus groups were conducted with YA cancer survivors (N = 19) attending a patient-focused oncology conference. Grounded theory methodology guided analyses by using an inductive data-driven approach to thematic content analysis. Results: Participants averaged 33 years old (standard deviation [SD] = 5.5), were 10 years postdiagnosis (SD = 2.3), and were primarily female (79%). Key cancer survivorship topics included adjusting to a "new normal," staying connected with cancer peers, and dealing with post-Treatment medical care. Perceptions of YA survivorship research were mixed. YAs appreciated and were optimistic about the potential for benefit from research. Specific barriers for participation included perceptions of research being inaccessible, overwhelming, and frustrating; participation as inconvenient and burdensome; and researchers being viewed with skepticism and mistrust. They recommended: (1) making age-Appropriate, patient-focused changes (e.g., language and design of study materials); (2) increasing participants' control, flexibility, and convenience of procedures; and (3) creating a back-And-forth dialogue between YAs and researchers. Conclusion: We assessed YA survivors' perceptions of YA cancer survivorship and research. Communication strategies are needed to address negative perceptions and perceived barriers to research participation. This includes tailoring of dissemination efforts and developmentally targeted implementation of YA priorities into the research process. Age-specific, patient-focused research practices may foster trust within the YA cancer survivor community and improve research participation.

Original languageEnglish (US)
Pages (from-to)103-111
Number of pages9
JournalJournal of Adolescent and Young Adult Oncology
Volume7
Issue number1
DOIs
StatePublished - Feb 2018
Externally publishedYes

Keywords

  • adolescent and young adult oncology
  • cancer survivorship
  • patient engagement
  • research

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