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

SES-1303633 Peter ConradAmanda Gengler布兰迪斯大学 很少有危机比孩子的重病对家庭生活的核心影响更深。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。近年来，随着救生技术的迅速发展，获得这些专业技术的机会有限可能比以往任何时候都更加严重。本论文研究探讨了重病儿童家庭必须做的工作，以调动所需的资源，激活社交网络，并代表他们的孩子提升美国医疗保健系统的水平，并为他们的孩子获得最好的护理。这项研究将结合对在精英大学研究医院接受治疗的重病儿童家庭进行持续深入的访谈和人种学观察，以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医生进行谈判。护士，找到并调动所需的资源，并代表他们的孩子进行宣传。尽管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巨大健康差异方面取得了重要进展，但这项工作的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的个人健康行为。对于参与疾病过程的关键社会参与者之间的微观行动和相互作用如何导致和维持所获得的护理类型、数量和质量方面的不平等，人们知之甚少。这项研究探讨了家庭必须采取哪些行动才能让孩子获得最好的医疗护理，并预测家庭在获得各种社会、物质和象征性资源方面的差异以及家庭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 这项研究的结果将加深我们对在整个疾病过程中造成和维持严重不平等的微妙机制的理解，从而提供重要的见解，可以改善卫生政策以及向重病儿童家庭提供医疗保健和支持服务。这些改进可能会为家庭提供平等获得所需护理和资源的机会提供可能。因此，结果可能会引起医生、护士、社会工作者、患者教育工作者和医疗保健政策制定者的兴趣，并将在与医疗保健提供者的后续演示和未来的课堂教学中广泛分享。

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.