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

S-1303633彼得·康拉德阿曼达·成勒·布兰代斯大学没有什么危机能比孩子的重病更深刻地影响到家庭生活的核心。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以及他们家庭的生活质量有着深远的影响。随着近年来救生技术的迅速发展，有限的获得这些专门技术的机会可能比以往任何时候都更加重要。这篇论文研究了重病儿童的家庭必须做的工作，以动员所需的资源，激活社会网络，并代表他们的孩子提升美国医疗体系的阶梯，并为他们的孩子获得尽可能好的照顾。这项研究将结合正在进行的密集访谈和对在一所精英大学研究医院接受治疗的重病儿童的家庭的民族志观察，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，如何与医生和护士谈判，定位和动员所需的资源，并代表他们的孩子进行倡导。虽然社会科学家长期以来一直在记录--并在解释种族和社会经济差异方面取得了重大进展--但这些工作大多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上。关于微观层面的行动和参与疾病进程的关键社会行为者之间的互动如何有助于造成和维持所获得的护理类型、数量和质量方面的不平等，我们所知的要少得多。这项研究审查了家庭必须采取的行动，以使他们的孩子获得他们可以获得的最好的医疗服务，并预测，家庭获得各种社会、物质和象征性资源的差异以及家庭倡导战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发现将增进我们对微妙机制的理解，通过这些微妙的机制，在整个疾病过程中造成和维持显著的不平等，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。这些改进可能提供开始使家庭获得所需护理和资源的机会均等的潜力。因此，结果可能会引起医生、护士、社会工作者、患者教育工作者和卫生保健政策制定者的兴趣，并将在与卫生保健提供者的后续演示中广泛分享，并在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.