The Isolating and Insulating Effects of Hepatitis C: A Substantive Grounded Theory

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Abstract

Hepatitis C has a global prevalence of 3%, causing chronic infection in 75% of cases, and is currently the main cause of liver transplant in the United Kingdom. This study reviewed patients’ and service providers’ perspectives on hepatitis C as an enduring condition, using a constructivist grounded theory approach. A constant comparative approach to data collection and analyses incorporating a coding paradigm was applied to semistructured interviews, focus groups, and memos. Sixteen patients and three focus groups of staff (n = 17) were recruited via purposive theoretical sampling (February through August 2008). A negative synergistic relationship between the condition hepatitis C, patients, and service providers that creates isolating and insulating effects for the relevant parties emerged from the data as a middle-range theory. Stigma and contagion create a “real” or perceived sense of isolation for hepatitis C comorbid and itinerant patients, who require the right support at the right time. Healthcare staff adhere to professional demarcation lines to manage potentially untenable patient caseloads. In turn, patients and professionals perceive that a crisis may be required to bring about successful therapeutic intervention. A service that incorporates seamless outreach services and facilitates interdisciplinary working is needed to manage complex patients with this enduring condition.

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