Caregiver Outlook: An Intervention to Improve Caregiving in Serious Illness

描述(由申请人提供)： 这项研究将证明临终准备和完成干预是否改善了照顾者的焦虑、抑郁、预期悲伤、负担和完成，并提高了患者的生活质量和卫生保健利用。如果有效，这种干预(Caregver Outlook)提供了一种简短、廉价和可运输的非内科治疗方法，用于改善退伍军人及其临终照顾者的体验。非正式的照顾者为临终病人提供了大部分护理。改善照顾者和患者体验的努力往往集中在疼痛和症状管理以及应对技能上。然而，关于如何有效地解决照顾者角色中可能增加护理能力的其他因素，即他们与患者的关系，人们知之甚少。这种关系经历的两个重要元素是临终准备和完成。如果无人照看，照顾者可能会发现自己照顾亲人的能力降低，无法做出影响照顾的关键决定。我们设计了护理者展望干预，基于人类发展文献以及健康传播和临床心理学中的强有力证据，这些证据解决了表达情绪和压力对健康结果的价值。我们的具体目标是：1)评估护理者展望干预措施对照顾者焦虑、抑郁、预期悲伤、完成情况和负担的影响；2)评估护理者展望干预措施对患者健康服务利用的影响，以住院、急诊科或护理机构的天数衡量；3)评估护理者展望干预措施对晚期疾病患者生活质量的影响；4)分析干预环节的定性内容，检查与性别、种族、社会经济状况、家庭沟通质量和疾病阶段相关的变化，以提高对干预变化机制的理解。我们建议采用随机对照试验来评估干预措施。214名患有晚期癌症、充血性心力衰竭或慢性阻塞性肺病的照顾者和退伍军人的二元组将被随机分配到两个干预组中的一个，并完成一系列简短的测试前措施。第一组(“治疗”)的照顾者将与辅导员会面三次，时间为45分钟。在第一节课中，受试者将被要求讨论与关系生活回顾相关的问题。在第二节课中，参与者将被要求更深入地谈论后悔和原谅等问题。在最后的环节中，主题将集中在遗产和庆祝活动上。照顾者中的 第二组(“注意力控制组”)将与主持人会面三次，每次40分钟，并被要求听一张无指导的放松CD。两组的参与者都将接受由盲人面试者实施的测试前后的测量。结果将使用FACT-G和生活质量量表、Facit-SP子量表、抑郁症流行病学研究中心简表、情绪焦虑量表、预期悲痛量表、照顾者反应评估、QUAL-E完成和准备子量表以及在家住院天数来衡量。

DESCRIPTION (provided by applicant): This study will demonstrate whether an end-of-life preparation and completion intervention improves reduces caregiver anxiety, depression, anticipatory grief, burden and completion and improves patient quality of life and health care utilization. If effective, the intervention (Caregver Outlook) offers a brief, inexpensive, and transportable non-physician treatment method for improving the experience of veterans and their caregivers at end-of-life. Informal caregivers provide a majority of care for patients at the end of life. Efforts to improve caregiver and thus patient experience often focus on pain and symptom management and coping skills. However, less is known about effective ways to address other elements of caregivers' role that may increase capacity to care, namely their relationship to the patient. Two important elements of this relationship experience are end-of-life preparation and completion. Left unattended, caregivers may find themselves less capable of caring for a loved one and unable to make crucial decisions influencing care. We designed the Caregiver Outlook intervention, based on the human development literature and robust evidence in health communication and clinical psychology that addresses the value of expressing emotions and stress on health outcomes. Our specific aims are to: 1) Evaluate the impact of the Caregiver Outlook intervention on caregiver anxiety, depression, anticipatory grief, completion, and burden; 2) Evaluate the impact of the Caregiver Outlook intervention on patient health service utilization, as measured by number of days at home versus in hospital, emergency department, or nursing facility; 3) Evaluate the impact of the Caregiver Outlook intervention on quality of life in patients with advanced disease; 4) Analyze the intervention session's qualitative content, examining variation associated with gender, ethnicity, social economic status, quality of family communication, and stage of illness to improve understanding of the intervention mechanisms of change. We propose a randomized control trial to evaluate the intervention. Dyads of 214 caregivers and veterans with advanced cancer, CHF, or COPD will be randomly assigned into one of two intervention groups and complete a brief battery of pre-test measures. Caregivers in the first group ("treatment") will meet with a facilitator three times for a period of forty-five minutes eac. In the first session, subjects will be asked to discuss issues related to relationship life review.In session two, participants will be asked to speak in more depth about issues such as regret and forgiveness. In the final session, subjects will focus on legacy and celebration. Caregivers in the second group ("attention control") will meet with a facilitator three times for a period of forty-fve minutes each and be asked to listen to a non-guided relaxation CD. Participants in both groups will receive pre and post-test measures administered by a blinded interviewer. Outcomes will be measured using the FACT-G and quality of life scale, the FACIT-sp sub-scale, the Centers for Epidemiologic Study of Depression short form, the Profile of Moods anxiety sub-scale, the Anticipatory Grief Scale, Caregiver Reaction Assessment, the QUAL-E completion and preparation sub-scales, and patient days at home.