Doctoral Dissertation Improvement Grant: Sociocultural Analysis of Expectation and Decision Making by the Critically Ill

卡罗琳萨金特博士的监督下，研究生Shauna Claiborne鲍尔斯，将进行新技术如何在个人和他们的社交网络到现存的社会，文化和道德规范的水平纳入研究。她将调查如何危重病人，谁有资格接受姑息治疗，形成期望，并在美国医院的生命结束时作出决定。 在生物医学机构，生物技术现在使个人比以往任何时候都能在生命有限的条件下活得更长，但也给无法治愈的病人带来焦虑和冲突，他们必须面对文化塑造的对积极结果的期望与失去希望之间的矛盾。本研究将有助于理解患者如何应对技术创新所创造的这一领域。有两个总体目标：（1）研究影响患者及其网络如何使用希望和否认的结构来形成对未来的期望的具体因素;以及2）了解决策权如何在临床医生、患者和他们的网络之间协商，以及当对最合适的治疗方案存在分歧时会发生什么。 作为一个自然的实验，研究设计比较了与姑息治疗团队互动的患者与不互动的患者。研究人员将通过参与观察、决策分析、与患者、患者社交网络中的人和临床医生的访谈收集信息，以提供多个视角。中心研究问题包括：如何期望住院治疗的结果出现，并随着时间的推移而变化？希望和否认如何塑造生命结束时的期望和决定？在住院期间，希望和否认是如何演变和变化的？ 姑息治疗实践如何影响这些过程？这项研究将有助于对新技术如何融入社会和文化系统的社会科学理解。具体而言，它将进一步从理论上理解紧急期望的形成，生物医学知识的社会建构，以及技术影响危重病人的疾病经历。这项研究还将有助于了解文化和种族多样的危重病人及其社交网络的需求，这些群体的声音往往代表性不足。关注从治愈性治疗到姑息性治疗的过渡将揭示在生命结束时塑造期望和决定的因素。 这些制度，社会和文化因素，特别是那些可能引发道德困境的姑息治疗提供，将告知护理标准和提供姑息治疗的做法，因此，对公共政策的影响。

Graduate student Shauna Claiborne Bowers, supervised by Dr. Carolyn Sargent, will undertake research on how new technologies are incorporated at the level of the individual and their social networks into extant social, cultural, and ethical codes. She will investigate how critically ill patients, who are eligible for palliative care, form expectations and make decisions at the end of life in a United States hospital. In biomedical institutions, biotechnologies now enable individuals to live longer than ever with life-limiting conditions, but also generate anxiety and conflict for patients who cannot be cured and must confront the contradiction between culturally shaped expectations for a positive outcome and the loss of hope. This research will help to understand how patients negotiate this terrain created by technological innovation.There are two overarching objectives (1) to examine the specific factors that influence how patients and their networks use constructions of hope and denial to formulate expectations for the future; and 2) to understand how decision making power is negotiated between clinicians, patients, and their networks, and what happens when there is disagreement about the most appropriate plan of treatment. As a natural experiment, the research design compares patients who interact with the palliative care team with those who do not. The researcher will collect information through participant observation, decision analyses, interviews with patients, people in patients' social networks, and clinicians, to provide multiple perspectives. Central research questions include: How do expectations for the outcome of hospitalization emerge and change over time? How do hope and denial shape expectations and decisions at the end of life? How do hope and denial evolve and change throughout hospitalization? How do palliative care practices influence these processes? The research will contribute to social scientific understanding of how new technologies become incorporated in social and cultural systems. Specifically, it will further theoretical understandings of the formation of emergent expectation, the social construction of biomedical knowledge, and the technology influenced illness experiences of critically ill individuals. This research also will contribute to understanding the needs of culturally and ethnically diverse critically ill patients and their social networks, groups whose voices are often underrepresented. Focusing on transitions from curative to palliative treatments will reveal factors that shape expectations and decisions at the end of life. These institutional, social, and cultural factors, especially those which may provoke ethical dilemmas in the delivery of palliative care, will inform standards of care and practices in delivery of palliative care and, therefore, have implications for public policy.