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

Abstract

Because family caregivers of patients with a high-grade glioma experience high levels of distress and feel unprepared in performing the complex caregiving tasks associated with the disease and its treatment, we pilot-tested a caregiving skills intervention that integrates hands-on caregiving with coping skill training. In this single-arm trial, caregivers participated in a 4-session research nurse-led intervention involving simulation-based caregiving skills training at the hospital and psychoeducation delivered via videoconference. We collected measures of patients’ and caregivers’ psychological symptoms (HADS); caregivers’ caregiving self-efficacy (CSE) and role adjustment (CRA); and patient’s cancer-related symptoms (MDASI) at baseline and again post-intervention. We tracked feasibility data. We approached 29 dyads of which 10 dyads (34%) consented. All patients (mean age: 60 years, 89% male) and caregivers (mean age: 58 years, 80% female, 80% spouses) completed the baseline and 7 dyads completed the follow-up assessments (attrition was related to patient’s hospice transfer). Seven caregivers completed all 4 sessions and rated the program as beneficial. Paired t-tests revealed a significant improvement in caregiving self-efficacy at 6 weeks post-intervention (t =-3.06, P=.02). Although improvements in caregiver role adjustment and patient and caregiver symptoms were not observed, no decreases in symptom burden or role adjustment were found during the follow-up period. This novel supportive care program appears to be safe, feasible, acceptable, and perceived as useful for caregivers of patients with high-grade glioma. Based on feasibility indicators and a signal of intervention efficacy, a randomized controlled trial is warranted.