Beneath the Urologic Iceberg: A Qualitative Study

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DESCRIPTION (provided by applicant): The metaphor of an "illness iceberg" (Last, 1963; 2001) is employed in recognition of the fact that, while common, some clinically important symptoms never make it to the health care system for effective treatment. Many symptoms are: (a) recognized by individuals, presented for treatment, diagnosed, treated and eventually recorded as a case. Others, however, are: (b) recognized, presented, but not diagnosed, treated, or counted; some symptoms are (c) recognized by individuals but not presented (possibly receiving self care); while others (d) are not recognized and never presented, treated or counted. Building on the epidemiologic findings from the Boston Area Community Health (BACH) survey (DK56842), this qualitative research is designed to explore the submerged areas of urologic disease, in order to understand reported disparities in help-seeking for a specific constellation of symptoms (Urinary Incontinence, Lower Urinary Tract Symptoms and Interstitial Cystitis/Painful Bladder Syndrome), by race/ethnicity, gender, age and SES. BACH is revealing how different sociocultural groups respond to these urologic symptoms; this complementary qualitative research is designed to explain why. BACH subjects (already identified) will be randomly selected to fill specific design cells. Established qualitative techniques will be employed by experienced investigators to elicit information on values, beliefs, norms, attributions, barriers and the perceived stigma associated with urologic symptoms. Several features are designed to overcome perceived limitations of qualitative research (representativeness, external validity and replicability). The project has high public health significance: (1) There are few in-depth studies of the "urologic iceberg" being uncovered by the BACH study; (2) It represents a practical and focused approach to an emerging area of health disparities; (3) It highlights a flaw in reported urologic disease rates (only those presenting get counted); and (4) Better understanding of help-seeking can improve the everyday clinical management of disease.