BACKGROUND: Informal family caregivers constitute an important and increasingly demanding role in the cancer healthcare system . This is especially true for caregivers of patients with primary malignant brain tumors based on the rapid progression of disease, including physical and cognitive debilitation . Informal social network resources such as friends and family can provide social support to caregivers, which lowers caregiver burden and improves overall quality of life . However, barriers to obtaining needed social support exist for caregivers . To address this need, our team developed and is assessing a multi-component caregiver support intervention that uses a blend of technology and personal contact to improve caregiver social support .
METHODS: We are currently conducting a prospective, longitudinal 2-group randomized controlled trial which compares caregivers who receive the intervention to a wait-list control group . Only caregivers directly receive the intervention, but the patient-caregiver dyads are enrolled so we can assess outcomes in both . The 8-week intervention consists of two components: (1) The electronic Social Network Assessment Program, a web-based tool to visualize existing social support resources and provide a tailored list of additional resources; and (2) Caregiver Navigation, including weekly phone sessions with a Caregiver Navigator to address caregiver social support needs . Outcomes are assessed by questionnaires completed by the caregiver (baseline , 4-week , 8-week) and the cancer patient (baseline, and 8-week). At 8 weeks, caregivers in the wait-list condition may opt into the intervention . Our primary outcome is caregiver well-being; we also explore patient well-being and caregiver and patient health care utilization .
DISCUSSION: This protocol describes a study testing a novel social support intervention that pairs a web-based social network visualization tool and resource list (eSNAP) with personalized caregiver navigation . This intervention is responsive to a family-centered model of care and calls for clinical and research priorities focused on informal caregiving research .
TRIAL REGISTRATION: clinicaltrials.gov, Registration number: NCT04268979; Date of registration: February 10 , 2020, retrospectively registered.