Intervention to improve end of life care for Latinos

描述（由申请人提供）：癌症是美国拉丁美洲人死亡的主要原因，随着人口老龄化，未来几十年内，面临癌症风险和死于癌症的绝对人数将增加。在这个老龄化的人口中，拉丁美洲人是最大和增长最快的少数群体。虽然研究很少，但有证据表明，拉丁美洲癌症护理人员的结果更糟，包括更多的抑郁症和丧亲生活质量更差。研究表明，与医院或无支持的家庭护理相比，临终关怀可以为护理人员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美洲人。 我们目前正在完成一项定性研究，比较拉丁裔和白色丧亲癌症护理人员谁使用临终关怀那些谁没有。我们的研究结果表明，文化因素，如集体主义的取向和社交网络的临终关怀使用的关键决定因素。此外，人们对临终关怀服务缺乏了解，对服务的提供也知之甚少。基于这些结果，我们设计了一种干预措施，使用训练有素的双语和双文化的非专业卫生工作者（LHW）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。此外，社署亦会推行社区教育，以加深市民对善终服务的认识。 该研究旨在前瞻性地招募40名绝症患者及其照顾者的可行性。患者和家属将由合作医生确定。20人将接受干预;他们将与20人进行比较，后者将接受常规护理和印刷材料。结果测量包括：使用临终关怀的天数;对临终关怀的了解;对护理的满意度。此外，我们将进行干预的过程评估，包括过程变量的定性和定量分析。一个可行的和有效的干预措施的证据将提供一个模式的照顾使用与拉丁美洲国家和其他族裔群体。 将要求医生识别ECOG评分为3或4的拉丁裔患者，并询问他们或其护理者是否同意与研究RA交谈。患者可以处于任何护理阶段，包括治愈性治疗，并且不需要准备临终关怀转诊。该研究提供的信息是关于“如果需要，未来是否可以获得护理。“预后和目前的治疗将不会被讨论。采取这种方法的一个原因是我们不想干涉当前的护理计划;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将介绍研究并要求参与。如果家庭同意，他们将在基线时接受采访，然后被选为干预组或对照组。在干预组，他们将被分配一个训练有素的双语和双文化顾问，告诉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，如车轮上的饭菜。顾问将在整个丧亲期间和丧亲期间提供服务，帮助照顾者获得丧亲服务。对照组家庭将得到常规护理和书面材料。

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.