From Treatment to Recovery: Gynecological Survivors’ and Caregivers’ Perspectives About the Usability of an Educational Resource

Abstract

The objective of this study was to understand gynecological cancer (GC) survivors’ and their informal caregivers’ perceptions about the usability of an educational resource to support their transition from primary cancer treatment into surveillance and/or recovery. After developing an empirical- and experiential-informed educational resource, we used a semi-structured questioning process to understand GC survivors and their caregivers’ perceptions about its usability. Data were collected via online focus groups or 1:1 interviews that were audio recorded and transcribed. We used thematic analysis to analyze the data. Ten participants who were survivors or informal caregivers of cervical, ovarian, or uterine/endometrial cancer participated in two rounds of data collection. We grouped qualitative data into two themes: (1) reputable, relevant, and accessible education reduces uncertainty and promotes connection, and (2) individualized delivery of education provided by trusted cancer clinicians. The transition from treatment to surveillance is a challenging time for which reputable, relevant, and accessible educational resources are useful to facilitate an understanding about and self-management of survivorship-related concerns. Survivors and caregivers look to clinicians to provide reputable education to address their needs. This education should be diverse in content and referred to repeatedly throughout the cancer trajectory.