Muasher-Kerwin Christy, Hughes M Courtney, Foster Michelle L, Econie Samantha M
Department of Physical Therapy, Northern Illinois University, DeKalb, IL, 60115, USA.
Department of Public Health, Northern Illinois University, DeKalb, IL, USA.
Support Care Cancer. 2025 May 28;33(6):510. doi: 10.1007/s00520-025-09545-z.
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.
患有脑瘤或照顾脑瘤患者会带来重大的情感、身体和经济挑战。患者常常要应对艰难的治疗决策以及扰乱日常生活的症状，而非正式护理人员则必须应对复杂的医疗需求、认知和行为变化，以及在亲人面临改变人生的诊断时给予支持所带来的心理压力。本研究旨在探索脑瘤在线讨论论坛的内容，以更多地了解脑瘤患者及其非正式护理人员所分享的经历、担忧和应对策略。
本研究收集了2024年9月在四个在线论坛上发帖者的数据。分析包括总共383个帖子。使用Dedoose进行应用主题分析以确定总体分析结果。
出现了五个主要分析结果：情感和心理反应、沟通和信息挑战、实际和后勤挑战、家庭和社会动态，以及与论坛参与者的联系。情感反应包括恐惧和“扫描焦虑”情绪，以及同伴支持所带来的如感激和恢复力等积极情绪。参与者经常报告医疗保健沟通方面的差距，并分享应对护理后勤和经济压力的策略。家庭互动被描述为力量和紧张关系的来源，论坛被描述为情感支持、认可和实用建议的重要途径。
这些发现凸显了在线论坛在提供有关患者和护理人员优先事项的宝贵见解方面的独特作用，并显示出它们补充传统研究方法的潜力。未来的研究应探索参与论坛对心理健康和护理结果的长期影响，以最大限度地发挥其在医疗环境中的效用。
