ArticleSupportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer2025
"We are a club none of us wanted to join": exploring brain tumor online discussion forum content.
Article in Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
1 citing paper in PubMed.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeLiving 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.
methodsThis 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.
resultsFive 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.
conclusionThese 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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the Socratic graph.