Doctoral Dissertation Research: Resources, Micro-level Actions, and Health Disparities

很少有危机比孩子的重病更深刻地打击家庭生活的核心。家庭和医疗保健提供者如何应对这场危机对儿童未来的健康和福祉及其家庭的生活质量具有深远的影响。随着近年来救生技术的迅速发展，获得这些专门技术的机会有限可能比以往任何时候都更加严重。本论文的研究探讨了重病儿童的家庭必须做的工作，以调动所需的资源，激活社交网络，并代表他们的孩子主张在美国医疗保健系统中向上移动，并为他们的孩子获得最好的照顾。这项研究将结合正在进行的密集访谈和人种学观察，与在精英医疗中心接受治疗的重病儿童的家庭结合起来。在一所大学研究医院，研究不同种族和社会经济背景的家庭如何面对各种严重的儿童疾病与医生和护士谈判，找到和调动所需的资源，并代表他们的孩子倡导。虽然社会科学家长期以来一直记录-并在解释-种族和社会经济鸿沟之间的重大健康差异方面取得了重要进展，但这方面的工作大部分集中在宏观层面的结构性不平等或微观层面的孤立个人健康行为。人们对参与疾病过程的关键社会行为者之间的微观行动和互动如何促成和维持所获得的护理类型、数量和质量方面的不平等知之甚少。这项研究探讨了家庭必须采取的行动，让他们的孩子获得最好的医疗保健提供给他们，并预测，家庭的差异获得各种社会，物质和象征性的资源沿着家庭的宣传策略的差异可能会导致健康结果的差异和更广泛的社会不平等。更广泛的影响这项研究的结果将促进我们对在整个疾病过程中产生和维持显著不平等的微妙机制的理解，从而提供重要的见解，可以改善卫生政策，为重病儿童的家庭提供医疗保健和支持服务。这种改善可能会使家庭开始平等地获得所需的护理和资源。因此，结果可能是感兴趣的医生，护士，社会工作者，病人教育工作者和医疗保健政策制定者，并将广泛分享在后续演示与医疗保健提供者，并在未来的课堂教学。

SES-1303633 Peter ConradAmanda GenglerBrandeis UniversityFew crises strike deeper at the heart of family life than a child's serious illness. How families and healthcare providers respond to this crisis has profound implications for a child's future health and wellbeing, and their families' quality of life. As life-saving technologies have advanced rapidly in recent years, limited access to these specialized technologies may be more consequential than ever. This dissertation research examines the work families of seriously ill children must do to mobilize needed resources, activate social networks, and advocate on behalf of their child to move up the rungs of the U.S. healthcare system and obtain the best possible care for their child.This research will use a combination of ongoing intensive interviews and ethnographic observations with families of seriously ill children being treated at an elite university research hospital to study how families across diverse racial and socioeconomic backgrounds confronting a variety of serious childhood illnesses negotiate with doctors and nurses, locate and mobilize needed resources, and advocate on behalf of their children. While social scientists have long documented--and made important strides towards explaining--significant health disparities across racial and socioeconomic divides, much of this work has focused on structural inequalities at the macro level or on isolated individual health behaviors at the micro-level. Much less is known about how micro-level actions and interactions between critical social actors involved in the illness process contribute to the creation and maintenance of inequalities in the type, amount, and quality of care obtained. This research examines the actions families must take to get their children access to the best medical care available to them, and predicts that differences in families' access to a variety of social, material, and symbolic resources along with differences in families advocacy strategies may contribute to disparities in health outcomes and broader social inequalities. Broader ImpactsFindings from this research will advance our understanding of the subtle mechanisms through which significant inequalities are created and sustained throughout the illness process and thus offer important insights that could improve health policy and delivery of healthcare and support services to families of seriously ill children. Such improvements may offer the potential to begin to equalize families' access to needed care and resources. Results are therefore likely to be of interest to doctors, nurses, social workers, patient educators and healthcare policy-makers, and will be shared widely in follow-up presentations with healthcare providers, and in future classroom teaching.