Pilot of an Intervention for Caregivers of Hospice HF Patients

描述（由申请人提供）：越来越多的安宁疗护病人以心力衰竭为主要诊断。安宁疗护为病人及其家属提供全面的缓和疗护，但即使接受安宁疗护，家庭照护者的需求也经常得不到满足。这些家庭照顾者在与照顾相关的压力相关问题上的风险很高。由于心衰的慢性、相关症状和死亡轨迹，心衰对家庭成员的压力尤其大。在我们先前对癌症安宁疗护病人家属照护者的研究中，我们已经证明，在安宁疗护病人临终前非常紧张的照护期间，提供安宁疗护家庭照护者一个简短（3次）的问题解决训练计划，可改善照护者的生活品质，并减轻照护者的负担。在先前的研究中，解决问题的训练计划被证明比单独的安宁疗护，或安宁疗护加上一个控制照顾者注意力和情感支持的条件更有效。在本研究中，我们将试点测试一套照顾者问题解决方案，该方案已经过修改，以适应心力衰竭安宁疗护病人的家庭照顾者的特殊需求。我们将进行一项小型随机临床试验，以确定HF COPE干预对临终关怀中HF患者照护者的效应大小，所选变量包括：照护者负担、生活质量、抑郁和焦虑、照护者知识、患者生活质量、急诊就诊和住院次数，并确定接受HF COPE干预的照护者与常规照护者相比的效应大小。此外，我们将采访照顾者并利用他们的反馈来进一步完善干预措施。提出的研究解决了现有文献中的一个主要空白。尽管心衰作为死亡原因的发生率很高，并且有文献记载心衰对家庭照顾者的负面影响，但我们没有发现现有的研究评估家庭照顾者干预这一高风险群体的有效性。由于提出的问题解决干预是标准化和手动化的，并且可以由安宁疗护护士来执行，如果这种干预被证明是有效的，它有可能改善许多面临心力衰竭压力的病人和家庭成员的生活质量。公共卫生相关性：该项目将试点测试一项干预措施，以培训护理人员解决问题的技能，并教育他们改善症状管理的方法，这将带来以下好处：a)改善患者症状，b)随后改善患者生活质量，c)降低护理人员对负担的估计，以及d)提高护理人员解决问题的能力。这些领域的任何改善都有能力改善照顾者的幸福感。

DESCRIPTION (provided by applicant): Increasing numbers of hospice patients are admitted with heart failure as a primary diagnosis. Hospice provides comprehensive palliative care for both patients and their family members, but family caregivers often have unmet needs, even when receiving hospice care. These family caregivers are at high risk for stress- related problems related to caregiving. Heart failure can be particularly stressful for family members, due to its chronicity, associated symptoms, and trajectory to mortality. In our previous research with family caregivers of hospice patients with cancer, we have demonstrated that providing hospice family caregivers with a brief (3-session) problem-solving training program improves caregiver quality of life, and decreases caregiver burden, during the very intense caregiving period before the death of the hospice patient. In this previous research, the problem solving training program proved more effective than hospice care alone, or hospice care plus a condition that controlled for attention and emotional support provided to the caregiver. In the proposed research, we will pilot test a caregiver problem solving protocol that has been modified to fit the special needs of family caregivers of hospice patients with heart failure. We will conduct a small randomized clinical trial to determine the effect size of the HF COPE intervention for caregivers of HF patients in hospice care for selected variables including: caregiver burden, quality of life, depression and anxiety, caregiver knowledge, patient quality of life, and Dyadic ER visits and hospitalizations and also to determine effect sizes for caregivers who receive the HF COPE intervention compared to usual care. In addition, we will interview caregivers and use their feedback to further refine the intervention. The proposed study addresses a major gap in the existing literature. Despite the high prevalence of heart failure as a cause of death, and the documented negative impact of heart failure on family caregivers, we have found no existing studies evaluating the effectiveness of a family caregiver intervention for this high risk group. Since the proposed problem solving intervention is standardized and manualized, and can be administered by hospice nurses, if this intervention proves effective, it has the potential to improve the quality of life of many patients and family members facing the stress of heart failure. PUBLIC HEALTH RELEVANCE: The project, which will pilot test an intervention to train caregivers in problem-solving skills and educate them on methods for improved symptom management, should lead to the following benefits: a). improvement in patient symptoms, b). subsequent improvement in patient quality of life, c). lower caregiver estimations of burden, and d). improved caregiver problem solving ability. Improvements in any of these domains have the ability to improve caregiver well-being.