Molecular Basis of Spinocerebellar Ataxia Type 1

姑息治疗（PC）咨询干预服务正在急剧增加，在急性护理医院设置与最低限度的知识，所有这一干预需要。这项为期4年的人种学研究的总体目的是对姑息治疗咨询服务所涉及的多个方面进行详细描述，包括他们如何工作，他们的障碍和促进者，以及他们在急性护理医院文化背景下的具体结果。 有强有力的证据表明，护理提供者在急性护理环境中对疼痛和其他症状（如呼吸困难和疲劳）的管理不足，特别是对接近生命终点的患者。在与患有严重和/或危及生命疾病的住院患者沟通、治疗决策以及必要时的临终规划方面存在困难。寿命更长和患有需要定期住院治疗的严重慢性病的成年人人数正在迅速增加。认识到这些和其他问题，医院正在开发多学科姑息治疗计划。然而，将PC整合到急性护理环境中是具有挑战性的，因为姑息和急性护理专业来自两个 这两种文化是不同的，前者来自临终关怀文化，后者来自治疗文化。 具体目标包括：1）描述和分析姑息治疗和医院文化的交叉点，以及在医院环境中与PC咨询相关的促进因素和障碍; 2）描述积极和姑息治疗目标的模式，以及它们在顺序和同时PC咨询中如何随时间变化;（3）从患者、家属、转介者和咨询者的角度考察PC咨询的经验和文化;（4）从患者、家属、转介者和PC咨询者的角度描述PC咨询的结果。 这项及时的研究将有助于填补科学知识的关键空白，帮助研究人员和 提供者更好地了解不断发展的文化，其中PC是提供这反过来，允许开发有效的干预措施，以改善PC在急性护理环境。

Palliative Care (PC) consultation intervention services are increasing dramatically in the acute care hospital setting with minimal knowledge of all that this intervention entails. The overall purpose of this 4- year ethnographic study is to develop a thick description of the multiple facets that a palliative care consultation service entails, how they work, their barriers and facilitators, and their specific outcomes in the context of the acute care hospital culture. There is strong evidence that care providers inadequately manage pain and other symptoms such as dyspnea and fatigue in the acute care setting, especially for patients near the end of life. There are difficulties in communication, treatment decision-making, and, when necessary, end of life planning with hospitalized persons with serious and/or life threatening illness. The number of adults living longer and living with serious chronic illness requiring periodic hospitalization is growing rapidly. In recognition of these and other concerns, hospitals are developing multidisciplinary palliative care programs. However, the integration of PC into acute care settings is challenging because palliative and acute care specialties arise from two separate cultures, the former from a hospice culture and the latter from a curative culture. The specific aims include: 1) To describe and analyze the intersection of palliative care and hospital cultures as well as the facilitators and barriers associated with PC consultation in the hospital setting; 2) To describe the patterns of aggressive and palliative care treatment goals and how they change over time in both sequential and concurrent PC consultation; 3) To examine the experiences and culture of PC consultation from the perspectives of patients, families, the referring and PC consultation providers; and 4) To describe the outcomes of PC consultation from the perspectives of patients, families, and the referring and PC consultation care providers. This timely study will help fill a critical gap in the scientific knowledge by helping researchers and providers to better understand the evolving culture in which PC is delivered which will in turn, allow for the development of effective interventions to improve PC in the acute care setting.