A randomized wait-list controlled trial of a social support intervention for caregivers of patients with primary malignant brain tumor

BMC Health Services Research

Steven K. Sutton¹  Margaret M. Byrne²  Rachael McCormick²  Maija Reblin²  Dana Ketcher²  Veronica Barrios-Monroy²  Peter Forsyth³  Solmaz Sahebjam³  Kristen J. Wells⁴  Bradley Zebrack⁵ 

[1] Department of Biostatistics and Bioinformatics, Moffitt Cancer Center, Tampa, FL, USA;Department of Health Outcomes & Behavior, Moffitt Cancer Center, 12902 Magnolia Dr, 33612, Tampa, FL, USA;Department of Neuro-Oncology, Moffitt Cancer Center, Tampa, FL, USA;Department of Psychology, San Diego State University, San Diego, CA, USA;SDSU/UC San Diego Joint Doctoral Program in Clinical Psychology, San Diego, CA, USA;School of Social Work, University of Michigan, Ann Arbor, MI, USA;

关键词: Caregiver;    Oncology;    Social support;    Psychosocial intervention;    Clinical navigation;    mHealth;   

DOI  :  10.1186/s12913-021-06372-w

来源: Springer

【 摘 要 】

BackgroundInformal 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.MethodsWe 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.DiscussionThis 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 registrationclinicaltrials.gov, Registration number: NCT04268979; Date of registration: February 10, 2020, retrospectively registered.

【 授权许可】

CC BY