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

Brandeis University, Waltham MA

Investigators

Abstract

SES-1303633 Peter Conrad Amanda Gengler Brandeis University Few 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 Impacts Findings 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.