"We are a club none of us wanted to join": exploring brain tumor online discussion forum content

Living with a brain tumor or caring for someone affected by one presents significant emotional, physical, and financial challenges. Patients often contend with difficult treatment decisions and symptoms that disrupt daily life, while informal caregivers must navigate complex medical needs, cognitive and behavioral changes, and the psychological toll of supporting a loved one through a life-altering diagnosis. This study aims to explore the content of brain tumor online discussion forums to learn more about the experiences, concerns, and coping strategies shared by brain tumor patients and their informal caregivers.

This study collected data from persons who posted on four online forums in September 2024. The analysis included 383 total posts. Applied thematic analysis using Dedoose was used to identify overarching analytic outputs.

Five major analytic outputs emerged: emotional and psychological responses, communication and information challenges, practical and logistical challenges, family and social dynamics, and connections with forum participants. Emotional responses included feelings of fear and "scanxiety," alongside positive feelings such as gratitude and resilience facilitated by peer support. Participants frequently reported gaps in healthcare communication and shared strategies for navigating caregiving logistics and financial strain. Family interactions were described as sources of both strength and tension, and forums were described as vital avenues for emotional support, validation, and practical advice.

These findings highlight the unique role of online forums in providing valuable insights into patient and caregiver priorities and show their potential to complement traditional research methods. Future research should explore the long-term impact of forum engagement on mental health and caregiving outcomes to maximize their utility in healthcare settings.