Intervention to improve end of life care for Latinos

描述(申请人提供)：癌症是美国拉美裔人的主要死因，未来几十年，随着人口老龄化，罹患癌症和死于癌症的绝对人数将会增加。在老龄化的人口中，拉美裔是规模最大、增长最快的少数群体。尽管几乎没有研究，但有证据表明，拉丁裔癌症照顾者的结果更糟糕，包括更多的抑郁和更差的丧亲生活质量。研究表明，与医院或无人支持的家庭护理相比，临终关怀可以为照顾者提供更好的护理和更少的压力。不幸的是，临终关怀的使用率很低，只有2%到6%的临终关怀患者是拉丁裔。 我们目前正在完成一项定性研究，将使用过临终关怀的拉丁裔和白人癌症照顾者与没有使用过临终关怀的人进行比较。我们的结果表明，文化因素，如集体主义取向和社会网络是临终关怀使用的关键决定因素。此外，缺乏关于临终关怀服务的知识，对提供服务的认识也很少。基于这些结果，我们设计了一种干预措施，使用一名训练有素的双语和跨文化的Lay Health Worker(LHW)来提供有关“未来可能需要的护理”的信息和咨询，并帮助家庭导航到临终关怀服务、其他社区资源和悲伤支持。卫生福利部亦会进行社区教育，以加深市民对善终服务的认识。 这项研究旨在试验40名绝症患者和他们的照顾者前瞻性登记的可行性。患者和家属将由合作的医生确定。将有20人接受干预；与之相比，20人将接受通常的护理和印刷材料。结果指标包括：使用临终关怀的天数；临终关怀知识；对护理的满意度。此外，我们将对干预措施进行过程评估，包括对过程变量的定性和定量分析。可行和有效的干预措施的证据将为全国拉丁裔和其他族裔群体提供一种护理模式。 医生将被要求识别ECOG评分为3或4的拉丁裔患者，并询问他们或他们的照顾者是否同意与研究RA交谈。患者可以处于包括根治治疗在内的任何护理阶段，不需要为临终关怀转诊做好准备。这项研究提供的信息是关于“如果需要，将来是否可以获得护理”。预后和目前的治疗将不会被讨论。采取这种做法的一个原因是，我们不想干扰目前的护理计划；另一个原因是，我们对不与患者讨论预后的文化规范很敏感。 我们的RA将介绍这项研究并请求参与。如果家属同意，他们将接受基线访谈，然后被选为干预组或对照组。在干预组，他们将被指派一名训练有素的双语和跨文化咨询师，告知他们未来的护理选择：姑息治疗、家庭临终关怀、住院临终关怀。如果有必要，他们还将接受咨询，并帮助获得临终关怀和其他社区服务，如车轮上的餐饮。顾问将在整个护理过程和丧亲期间提供帮助，帮助照顾者获得丧亲服务。对照家庭将得到通常的照顾和书面材料。

DESCRIPTION (provided by applicant): Cancer is the leading cause of death among Latinos in the US and the absolute number of individuals at risk for, and dying from cancer will increase over the coming decades as the population ages. Within this aging population, Latinos are the largest and fastest growing minority group. Although little research exists, there is evidence that Latino cancer caregivers have worse outcomes including more depression and poorer quality of life in bereavement. Studies have shown that hospices can provide better care and less stress for the caregiver than hospitals or unsupported home care. Unfortunately hospice use is low and only 2% to 6% of hospice patients are Latino. We are currently completing a qualitative study comparing Latino and White bereaved cancer caregivers who have used hospice to those who have not. Our results indicate that cultural factors, such as a collectivist orientation and social networks are key determinants of hospice use. In addition, there is a lack of knowledge about hospice services and little awareness of the availability of services. Based on these results, we have designed an intervention using a trained bi-lingual and bi-cultural Lay Health Worker (LHW) to deliver information and counseling about "care that may be needed in the future" and to help families navigate to hospice services, other community resources, and grief support. The LHW will also do community education to enhance understanding of hospice services. The study is designed to pilot the feasibility of prospectively enrolling 40 terminally ill patients and their caregivers. Patients and families will be identified by collaborating physicians. Twenty will receive the intervention; they will be compared to 20 who will receive usual care and print materials. Outcome measures include: number of days of hospice use; knowledge of hospice; satisfaction with care. In addition we will perform a process evaluation of the intervention including both qualitative and quantitative analyses of process variables. Evidence of a feasible and effective intervention will provide a model of care for use with Latinos nationally and with other ethnic groups. Physicians will be asked to identify Latino patients with ECOG scores of 3 or 4 and to ask if they or their caregiver would agree to talk with the study RA. The patient can be at any stage of care, including curative treatment, and need not be ready for hospice referral. The information provided by the study is about "the availability of care in the future, should it be needed." Prognosis and current treatment will not be discussed. One reason for this approach is that we don't want to interfere with the current plan of care; the other is that we are sensitive to the cultural norms of not discussing prognosis with patients. Our RA will introduce the study and ask for participation. If the family agrees, they will be interviewed at baseline then selected for an intervention or control group. In the intervention group, they will be assigned a trained bi-lingual and bi-cultural counselor to inform them about future care options: palliative care, home hospice, inpatient hospice. They will also receive counseling, if necessary, and help accessing hospice care and other community services such as Meals on Wheels. The counselor will be available throughout caregiving and during bereavement, helping caregivers access bereavement services. Control families will receive usual care and written materials.