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

很少有危机能比孩子的重病更深刻地冲击家庭生活的核心。家庭和医疗保健提供者如何应对这一危机对儿童未来的健康和福祉及其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，这些专业技术的有限获取可能比以往任何时候都更加重要。本论文的研究考察了重病儿童的工作家庭必须做的事情，以调动所需的资源，激活社会网络，并倡导代表他们的孩子在美国医疗保健系统的阶梯上移动，并为他们的孩子获得最好的照顾。本研究将结合对在精英大学研究型医院接受治疗的重病儿童的家庭进行深入访谈和人种学观察，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与医生和护士谈判，寻找和动员所需的资源，并代表他们的孩子进行宣传。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差异的重大健康差异方面取得了重要进展，但他们的大部分工作都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。关于参与疾病过程的关键社会行动者之间的微观层面的行动和相互作用如何导致所获得的护理的类型、数量和质量方面的不平等的产生和维持，我们所知甚少。本研究考察了家庭为让孩子获得最好的医疗服务而必须采取的行动，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宣传策略的差异可能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重大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，为重病儿童家庭提供医疗保健和支持服务。这种改进可能会使家庭获得所需的护理和资源的机会均等。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报告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.