Northwestern University Feinberg School of Medicine, Chicago, IL
Elizabeth Adams , David Tallman , Marcy Haynam , Larissa Nekhlyudov , Maryam B. Lustberg
Background: Internet and social media platforms offer insight into the experience of survivorship, but the volume of narrative data is often cumbersome for thorough thematic analysis. We present a semi-automated mixed methods approach to analyze web-based discussions and demonstrate its utility on American Cancer Society (ACS) Discussion Board posts from gynecologic cancer survivors. Methods: Posts from the ACS Ovarian Cancer, Uterine Cancer, and Other Gynecological Cancer Discussion Boards were analyzed for psychosocial themes described in the Cancer Survivorship Care Framework. Quantitative analysis was facilitated by verified keywords created for each theme of interest and was completed via custom Python scripts and R packages. Qualitative analysis was expedited by theme keywords and completed on a subset of posts. Results: A total of 125,498 posts made by 6,436 gynecological cancer survivors and caregivers between July 2000 and February 2020 were evaluated. Of all posts, 23,458 were related to psychosocial aspects of survivorship and were analyzed. Quantitative analysis revealed that survivors frequently discussed the role of friends and family in care, fatigue, health insurance issues, and the effect of cancer on loved ones. The most frequently used psychosocial-related words were “family,”“hope,” and “help.” Qualitative analysis demonstrated that survivors frequently discussed coping and caregiver relationships, where survivors sought advice on topics including spousal emotional adjustment, financial toxicity, and confronting mortality. Conclusions: Online platforms offer great opportunity to learn about patient experiences of survivorship care. Candid conversations between survivors may be leveraged to inform survivorship practices and improve future survivorship initiatives. Our novel methodology expedites thematic analysis of such robust narrative data and its translation into survivorship settings.
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