ACCESS_Access for Cancer Caregivers to Education and Support for Shared decisionmaking

获得(癌症护理人员获得教育和支持共同决策的机会) 摘要 我们设计了一项实用的随机对照试验，以测试对一个很少出现的人群的干预 研究-临终关怀家庭照顾者-针对确定的需求(决策)，并衡量核心集合 照顾者的结果(焦虑、疼痛知识和患者疼痛)。这项创新的提案将是第一个 临终关怀环境中的共享决策干预。该项目建议对临终关怀进行干预。 家庭照顾者称为Access(癌症照顾者获得教育和共享支持的途径 决策)。我们的初步工作(R01NR011472)发现，基于Web的应用是可行的 召开会议，促进家庭照顾者出席临终关怀计划会议。定性反馈 表明这种出席对家庭成员是有益的。然而，我们得出的结论是，简单地启用 出席这些会议不足以改变临床结果。对于照顾者来说，焦虑是 改变他们需要为这些遭遇做好准备，并积极参与共享的临终关怀工作人员 决策。迫切需要为临终关怀的家庭照顾者提供必要的信息和 强化了他们的情绪状态，因此他们可能会成为决策者。我们建议使用Facebook 改善情感支持和照顾者知识的平台，以更好地为照顾者参与做好准备 和决策。该提案基于将协作与共享相结合的概念模型 决策。一项实用的随机对照试验(P-RCT)设计将受试者随机分配到一组 三个组：1)组1将作为对照组，接受由临终关怀人员加强的常规临终关怀 共同决策培训，2)第2组是一个干预组，将接受通常的护理以及 参加一个私人Facebook支持小组，以增加他们的知识和社交/情感支持，3) 第三组将接受增强的日常护理，参加Facebook支持小组，并参与 临终关怀团队会议，共享决策流程。我们将用定性和定量相结合的方法 方法采用平行、平等的方法对干预效果进行评估。我们的总体假设是 Access将改善临终关怀癌症家庭照顾者的知识(通过YouTube视频)和情绪状态 (通过Facebook)，促进共同决策过程，这将改善照顾者的焦虑 和知识，并改善患者的疼痛控制。我们有三个具体目标：1)评估效果 对临终关怀FCGS焦虑、疼痛知识和患者疼痛的访问；2)评估社会干预的效果 媒体作为FCGS疼痛管理的决策辅助和决策支持；3)评估 工作人员和FCGS对疼痛管理的SDM流程的满意度。

ACCESS (Access for Cancer Caregivers to Education and Support for Shared decision-making) Abstract We have designed a pragmatic randomized controlled trial to test an intervention for a population seldom studied―hospice family caregivers―targeting an identified need (decision-making), and measuring a core set of caregiver outcomes (anxiety, pain knowledge, and patient pain). This innovative proposal will be the first shared decision making intervention in the hospice setting. This project proposes an intervention for hospice family caregivers called ACCESS (Access for Cancer Caregivers to Education and Support for Shared decision-making). Our preliminary work (R01NR011472) found that it is feasible to use web-based conferencing to facilitate family caregiver attendance at the hospice care plan meetings. Qualitative feedback indicates this attendance is beneficial to family members. However, we conclude that simply enabling attendance at these meetings is not sufficient to change clinical outcomes. For caregivers anxiety to be changed they need to be prepared for these encounters and actively engaged with the hospice staff in shared decision-making. There is a critical need to arm Hospice family caregivers with necessary information and a strengthened their emotional state so they may become decision-makers. We propose using the Facebook platform to improve emotional support and caregiver knowledge to better prepare caregivers for participation and decision-making. The proposal is based on a conceptual model that combines collaboration with shared decision-making. A pragmatic randomized controlled trial (P-RCT) design will randomly assign subjects to one of three groups: 1) Group 1 will serve as the control and receive usual hospice care enhanced by hospice staff training in shared decision making, 2) Group 2 is one intervention group and will receive usual care as well as participate in a private Facebook support group to increase their knowledge and social/emotional support, 3) Group 3 will receive enhanced usual care, participate in the Facebook support group, and participate in hospice team meetings with a shared decision making process. We will use qualitative and quantitative methods in parallel and equal status to measure the efficacy of the intervention. Our overall hypothesis is that ACCESS will improve hospice cancer family caregiver knowledge (via YouTube videos) and emotional state (via Facebook), facilitating a shared decision making process, which will result in improved caregiver anxiety and knowledge and improved pain control for patients. We have three specific aims: 1) Evaluate the effect of ACCESS on hospice FCGs anxiety, pain knowledge, and patient pain; 2) Evaluate the effect of social media as a decision aids and decision support for pain management for FCGs; 3) Evaluate the satisfaction of staff and FCGs with a SDM process for pain management.