Transplanting Kinship: Transplantation, Kin Relatedness, and Daily Home Life in the U.S. Midwest.

Abstract

This interdisciplinary dissertation examines the intersections of kin relatedness and daily home life among organ and blood-forming stem-cell transplant candidates and recipients, and those who care for them. It presents findings from ethnographic fieldwork spanning a total of 24 non-consecutive months, conducted in a major Transplant Center in the U.S. Midwest, and in homes and communities in the region surrounding the Center. Data collection methods included semi-structured and unstructured interviews with 100 patients, caregivers, and clinical professionals; participant observation and documentation of fieldnotes in clinical, home, and community field scenarios; and policy analysis and document review. Focusing on the interrelationships between homes (and everyday life) and hospitals (and clinical life), as well as their seemingly incompatible aspects, I draw upon case examples and field observations to make a series of interrelated arguments that roughly trace the contours of what I refer to as “the transplant journey,” from pre- through to post-transplant life. Relying on expanded notions of “caregiving” to include not only its obvious, but also its hidden and unexpected forms (such as making efforts to shield a loved one from worry or inconvenience), my findings point to the importance throughout the transplant journey of reciprocal webs of care and moral obligations in kinship and relatedness, all of which are cultivated and reflected within houses and home life. These inseparable domains (kinship, care, moral obligation, and home life), I argue, are interwoven with transplant care, which in turn is linked to evolving health policies and practices. I also examine the role of gender in transplant care, and highlight various constraints (e.g., the physical, emotional, financial, and logistical challenges) which patients and those close to them encounter throughout the transplant process. The findings of this study support two proposals for practice, that: 1) medical social workers and practicing anthropologists in transplant and other biomedical settings advocate for a more holistic, web of relations-oriented approach to care, and 2) social workers and anthropologists are uniquely positioned to influence the present health policy debates, and thus should work to make larger social justice issues regarding health a more prominent concern in the U.S.