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.
Bibliographical noteFunding Information:
Study activities and effort for MR, RM, VBM, SKS, BZ, KJW, SS, PF, and MMB are funded by the National Cancer Institute award R01 CA236034–01 (PI Reblin); DK’s time is funded by award 5T32CA090314–16 (PI Brandon/Vadaparampil). The study protocol has been independently peer-reviewed by the funder. This funding source had no role in the design of this study and will not have any role during its execution, analyses, interpretation of the data, or decision to submit results.
The authors would like to thank Richard Roetzheim, Amy Otto, Laura Rodriguez, and Kerie Walters.
© 2021, The Author(s).
- Clinical navigation
- Psychosocial intervention
- Social support