QOL-22. VACILLATING EMOTIONS AND SHIFTING INFORMATION PREFERENCES: A QUALITATIVE ANALYSIS OF CAREGIVER DISTRESS IN FACING A MALIGNANT GLIOMA DIAGNOSIS

Abstract BACKGROUND Caregivers of patients with malignant gliomas (MG) experience considerable psychological distress as they contend with the implications of their loved one’s terminal illness. However, caregivers’ specific reactions to the patient’s diagnosis/prognosis and optimal ways to support caregivers in the months following diagnosis remain poorly understood. METHODS At a single academic medical center, we enrolled English-speaking adults identified by patients with newly diagnosed MG as their primary caregiver. Using a semi-structured interview guide, we conducted in-depth interviews with caregivers at the conclusion of concurrent chemoradiation exploring their experiences learning about the patient’s diagnosis and their prognostic information preferences. We used rapid qualitative analysis to analyze interview data. RESULTS We interviewed 7 caregivers (female: 5/7; spouse/partner: 6/7, sibling: 1/7) of MG patients (glioblastoma: 5/7). Caregivers described the time following diagnosis as tumultuous and difficult as they struggled to cope with their distress related to navigating the practical burdens of cancer treatment while also managing the emotional burden (e.g. fear, sadness) of living amidst uncertainty. Caregivers vacillated between feeling devastated by the patient’s poor prognosis and wanting to remain hopeful (e.g., by seeking out inspiring survivorship stories). Caregivers also reported varying and often evolving preferences regarding the manner, timing, and context in which they received information about the patient’s MG. Many caregivers desired more prognostic information (e.g., to facilitate planning for their future and for the patient’s eventual demise) while some chose to focus on the present (e.g., to avoid “dwelling” on potential negative outcomes), in light of inherent uncertainty about the patient’s trajectory. CONCLUSIONS Caregivers experience significant distress in the context of vacillating emotions and shifting information needs as they adapt to life in the aftermath of a MG diagnosis. These results highlight the need for tailored prognostic information and support for caregivers during this stressful, emotionally fraught time.