An Examination of Patients and Caregivers on Reddit Navigating Brain Cancer: Content Analysis of the Brain Tumor Subreddit

Abstract

BackgroundOccurring in up to 40% of all patients with cancer, the incidence of brain tumors has caused limited survival, a high psychosocial burden, and an increase in the loss of decision-making capability for the unique population. Although specific symptoms depend on the type of brain tumor, a clinical team of physicians, nurses, and other individuals commonly assist patients and their caregivers with how to tackle the upcoming challenges of their diagnosis. Despite the support from clinical team members, many patients and caregivers may still seek outside support through social media to process their emotions and seek comfort outside of the clinical setting. Specifically, online resources such as Reddit are used where users are provided with the anonymity they need to show their true behavior without fear of judgment. In this study, we aimed to examine trends from Reddit discussion threads on brain tumors to identify areas of need in patient care.ObjectiveOur primary aims were to determine the type of Reddit user posting, classify the specific brain tumors that were the subject of the posts, and examine the content of the original posts.MethodsWe used a qualitative descriptive design to understand patients’ and caregivers’ unmet and met needs. We selected posts from the top-rated 100 posts from the r/braincancer subreddit from February 2017 to June 2020 to identify common themes using content analysis.ResultsThe qualitative content analysis revealed how Reddit users primarily used the forum as a method to understand and process the emotions surrounding a brain tumor diagnosis. Three major topic areas from content analysis emerged as prominent themes, including (1) harnessing hope, (2) moving through the grief process, and (3) expressing gratitude toward other Reddit users. Most of the authors of the posts were patients with brain tumors (32/88, 36%) who used Reddit as a reflective journaling tool to process the associated emotions of a challenging diagnosis.ConclusionsThis study shows the potential of Reddit to serve as a unique group therapy platform for patients affected by brain tumors. Our results highlight the support provided by the Reddit community members as a unique mechanism to assist cancer survivors and caregivers with the emotional processing of living with brain tumors. Additionally, the results highlight the importance of recommending Reddit as a therapeutic virtual community and the need for implementing online resources as a part of a health care professional’s repertoire to understand the level of support they can give their patients.