A randomized wait-list controlled trial of a social support intervention for caregivers of patients with primary malignant brain tumor.
A randomized wait-list controlled trial of a social support intervention for caregivers of patients with primary malignant brain tumor.
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一项针对原发恶性脑瘤患者照顾者的社会支持干预的随机等待名单对照试验。
DOI：
10.1186/s12913-021-06372-w
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发表时间：
2021-04-17
影响因子：
2.8
通讯作者：
Byrne MM
中科院分区：
文献类型：
--
作者：
Reblin M;Ketcher D;McCormick R;Barrios-Monroy V;Sutton SK;Zebrack B;Wells KJ;Sahebjam S;Forsyth P;Byrne MM
非正式的家庭照顾者在癌症医疗保健系统中扮演着重要且要求越来越高的角色。由于疾病的快速发展，包括身体和认知衰弱在内的原发恶性脑肿瘤患者的照顾者尤其如此。非正式的社会网络资源，如朋友和家人，可以为照顾者提供社会支持，从而减轻照顾者的负担，提高整体生活质量。然而，对于照顾者来说，获得所需的社会支持存在障碍。为了满足这一需求，我们的团队开发并正在评估一种多组成部分的照顾者支持干预措施，它利用技术和个人接触的结合来改善照顾者的社会支持。我们目前正在进行一项前瞻性的纵向2组随机对照试验，将接受干预的照顾者与等待名单的对照组进行比较。只有护理者直接接受干预，但患者-护理者二人组被登记，因此我们可以评估两者的结果。为期8周的干预由两部分组成：(1)电子社会网络评估计划，这是一个基于网络的工具，可以可视化现有的社会支持资源，并提供定制的额外资源列表；以及(2)护理者导航，包括每周与护理者导航员的电话会议，以满足护理者的社会支持需求。结果由照顾者(基线、4周、8周)和癌症患者(基线和8周)填写的问卷进行评估。在8 周，处于等待名单状态的照顾者可以选择加入干预。我们的主要结果是护理者的幸福感；我们还探索患者的幸福感以及护理者和患者的医疗保健利用情况。本协议描述了一项测试一种新型社会支持干预的研究，该干预将基于网络的社交网络可视化工具和资源列表(ESNAP)与个性化照顾者导航配对。这种干预是对以家庭为中心的护理模式的回应，并呼吁将临床和研究重点放在非正式护理研究上。ClinicalTrials.gov，注册号：NCT04268979；注册日期：2020年2月10日，追溯注册。
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. 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. 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. clinicaltrials.gov, Registration number: NCT04268979; Date of registration: February 10, 2020, retrospectively registered.
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影响因子：
120.7
作者：
Bevans, Margaret;Sternberg, Esther M.
通讯作者：
Sternberg, Esther M.
DOI：
10.1007/s12160-015-9743-y
发表时间：
2015-12
期刊：
Annals of behavioral medicine : a publication of the Society of Behavioral Medicine
影响因子：
--
作者：
Kershaw T;Ellis KR;Yoon H;Schafenacker A;Katapodi M;Northouse L
通讯作者：
Northouse L
影响因子：
4
作者：
Bonin-Guillaume, Sylvie;Durand, Anne-Claire;Gentile, Stephanie
通讯作者：
Gentile, Stephanie
影响因子：
3.1
作者：
Gregg, N.;Arber, A.;Yagueez, L.
通讯作者：
Yagueez, L.
影响因子：
3.8
作者：
Kim, Youngmee;Kashy, Deborah A.;Smith, Tenbroeck G.
通讯作者：
Smith, Tenbroeck G.