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“It was complete chaos day and night and no one was able to help”: A qualitative study on the support needs of family members exposed to violence by patients with brain tumors

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Neurooncol Adv. 2026 Apr 3;8(1):vdag077. doi: 10.1093/noajnl/vdag077. eCollection 2026 Jan-Dec.

ABSTRACT

BACKGROUND: This study is part of the Swedish national research project BRAVE ( B rain Tumor R elated A ggression and V iolence E xposure), which has highlighted extensive suffering among family members exposed to violence by brain tumor patients with behavioral and personality changes (BPC). The aim was to explore the needs, support received, and perceived gaps in support among family members exposed to violence by individuals suffering from brain tumor-related BPC.

METHODS: Individual interviews were conducted with 25 family members who had experienced violence from a brain tumor patient. The data were analyzed using qualitative content analysis.

RESULTS: Participants stressed the need for a holistic care approach, including private consultations with family members to enable the disclosure of violence by brain tumor patients. An integrated care approach and continuity of care were seen as essential for building trust, identifying violence, and supporting both patients and families. Participants expressed frustration with the healthcare system’s rigid focus on patient autonomy, even in cases where patients lacked cognitive capacity, leaving families without adequate information and support. They expressed that family members exposed to violence by brain tumor patients had complex needs for support.

CONCLUSIONS: The support needs of family members exposed to violence by individuals with brain tumors are multifaceted, and interventions must be tailored to specific circumstances. Addressing these needs requires coordinated efforts from multiple stakeholders. An intervention that provides appropriate support for patients, family members, and staff who encounter them is urgently needed.

PMID:42058761 | PMC:PMC13120878 | DOI:10.1093/noajnl/vdag077

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