Moffitt Cancer Center, 12902 Magnolia Dr., Tampa, FL, USA.
University of Utah, Salt Lake City, UT, USA.
J Neurooncol. 2018 Sep;139(3):643-649. doi: 10.1007/s11060-018-2909-2. Epub 2018 May 28.
Informal family caregivers (FCG) are an integral and crucial human component in the cancer care continuum. However, research and interventions to help alleviate documented anxiety and burden on this group is lacking. To address the absence of effective interventions, we developed the electronic Support Network Assessment Program (eSNAP) which aims to automate the capture and visualization of social support, an important target for overall FCG support. This study seeks to describe the preliminary efficacy and outcomes of the eSNAP intervention.
Forty FCGs were enrolled into a longitudinal, two-group randomized design to compare the eSNAP intervention in caregivers of patients with primary brain tumors against controls who did not receive the intervention. Participants were followed for six weeks with questionnaires to assess demographics, caregiver burden, anxiety, depression, and social support. Questionnaires given at baseline (T1) and then 3-weeks (T2), and 6-weeks (T3) post baseline questionnaire.
FCGs reported high caregiver burden and distress at baseline, with burden remaining stable over the course of the study. The intervention group was significantly less depressed, but anxiety remained stable across groups.
With the lessons learned and feedback obtained from FCGs, this study is the first step to developing an effective social support intervention to support FCGs and healthcare providers in improving cancer care.
非正式家庭护理人员(FCG)是癌症护理连续体中不可或缺且至关重要的人力组成部分。然而,缺乏研究和干预措施来帮助减轻该群体的焦虑和负担。为了解决缺乏有效干预措施的问题,我们开发了电子支持网络评估计划(eSNAP),旨在自动捕获和可视化社会支持,这是整体 FCG 支持的重要目标。本研究旨在描述 eSNAP 干预的初步疗效和结果。
40 名 FCG 被纳入一项纵向、两组随机设计的研究,以比较原发性脑肿瘤患者的 FCG 接受 eSNAP 干预与未接受干预的对照组。参与者在六周内接受问卷调查,以评估人口统计学、护理人员负担、焦虑、抑郁和社会支持。在基线(T1)和 3 周(T2)以及 6 周(T3)后进行基线问卷。
FCG 在基线时报告了较高的护理人员负担和困扰,在研究过程中负担保持稳定。干预组抑郁程度显著降低,但焦虑在两组中保持稳定。
根据从 FCG 获得的经验教训和反馈,这项研究是开发有效的社会支持干预措施的第一步,旨在支持 FCG 和医疗保健提供者改善癌症护理。