Simulation-Based Caregiving Skills Training for Family Members of High Grade Glioma Patients

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PROJECT SUMMARY/ABSTRACT Patients with brain tumors experience more debilitating sequelae compared to other cancer patients and thus, often dependent on their family members for care and support early on in the disease course. While caregiving- related activities are taxing in general, family caregivers of brain tumor patients face unique challenges related to patient cognitive decline, neurological and motor deficits, and personality changes due to the disease process and treatment. With the typical rapid disease progression and subsequent patient functional decline, caregivers increasingly assist patients with activities of daily living (e.g., bathing, feeding, dressing) as well as coordination of care, symptom and medication management, and decision-making. Essentially, caregivers provide basic nursing care without skill-based training. Moreover, despite clear evidence of high caregiver distress and burden, which may impact their ability to care for the patient, caregivers report that their support needs are often unattended to by multi-disciplinary oncology teams. In fact, the neuro-oncology literature generally lacks evidence-based supportive care interventions for this vulnerable population. To address these critical knowledge gaps, we propose to pilot-test a novel simulation-based caregiving skills intervention to target the unique needs of caregivers. Given interdependence in distress and quality of life in families coping with cancer, we expect that this caregiver-focused intervention will improve not only caregiver but also patient outcomes. Using a randomized controlled trial (RCT) design, patient-caregiver dyads will be randomized to the intervention or a waitlist control (WLC) arm. The intervention content will be delivered via three modes: education materials (i.e., workbook and video), two simulation-based caregiving skills training sessions, and two psychoeducation sessions addressing coping with caregiving-related role changes. The four manualized sessions will be nurse- led and tailored to the needs of the family’s current situation using a needs assessment driven approach. Patients and caregivers will complete self-report measures at baseline (prior to randomization) and 6 and 12 weeks later. We will assess patient and caregiver psychological symptoms, caregiver efficacy and role adjustment, and patient cancer-related symptoms as intervention outcomes. Because psychological distress in caregivers is associated with increased preventable healthcare utilization, we will abstract emergency department visits, hospital admissions, and unplanned oncologist visits from patients’ medical records. We will integrate qualitative accounts of the caregivers’ experiences with the multi-model intervention components. Feasibility data regarding consent, retention, adherence, and program evaluation will be recorded. The proposed work will provide rich pilot data that will inform a subsequent larger trial for formal efficacy testing of this innovative intervention seeking to improve cancer-related burden in this vulnerable yet understudied patient-caregiver population.