Navigating troubled waters: Chronic illness experience in a health care crisis

Abstract

<p>This dissertation chronicles the complexity of chronic illness experience in a western biomedically-oriented health care system. It combines an exhaustive description of what it is like to be chronically ill in the current social context with an analysis of the implications of health care service delivery structures and ideologies for shaping that experience. In so doing, it applies an account of the chronic illness experience toward an understanding of some inherent flaws underlying modern health care delivery systems. The methodology for this research applies secondary analysis to an extensive data base derived from indepth qualitative investigations of chronically ill individuals and their family members. It represents a naturalistic inquiry into the interrelated phenomena of chronic illness experience and of health care for chronic illness from the perspective of those who are expert witness to both. The findings reflect three layers of interpretation at which chronic illness may be understood: individual experience; social interaction, in general and in the context of health care relationships; and, involvement within the social institutions designed to deliver health care. The description proceeds from examination of individual elements of the chronic illness experience into a broader illumination of the interpersonal and institutional dimensions that shape it. The analysis weaves these micro and macro-level perspectives into a coherent portrait of the experience and into a foundation for critical examination of the current problems in health care from the perspective of an important consumer population. Finally, the concluding statements consider the implications of various proposals for health reform, both grand and small, in the light of what chronically ill people have to tell us about the system that influences their lives so profoundly. By analyzing the currently popular perspectives represented in the literature from the perspective of the experiential experts, this research projects the voice of the chronically ill into the intensely raging controversy about what can be done to reform health policy and health care delivery.</p>