What Do We Know About Women’s Experiences of Living With Hepatitis C? An Analysis of Canadian Women's Journey with Hepatitis C Care

Abstract

Background: The Hepatitis C virus (HCV) is a blood-borne infection affecting an estimated 170 million people worldwide including approximately 250,000 Canadians. Untreated HCV can contribute to significant morbidity and mortality. Despite the benefits of HCV care, there continues to be significant gaps in the uptake of services. Purpose: This thesis explored Canadian women’s experiences of the journey with HCV care from the perspective of the women, in order to promote care engagement, improve patient-provider relationships and deliver services that meet women’s needs. Methods: This study, inspired by grounded theory techniques, explored women’s experience of living with HCV and factors influencing their journey with care. Purposive and theoretical sampling across three Canadian provinces generated interviews with 25 women. Results: Three concepts were central to understanding women’s journey with HCV care: 1) The point of diagnosis shaped women’s journey with care through a) their preparedness for a positive diagnosis, and b) the information/health education they received; 2) Women faced complex barriers to care - (a) information provision, b) family and caregiver responsibilities, c) relationship with healthcare provider, d) active substance use and e) stigma and discrimination - but often showed inventiveness and determination to overcome them; 3) Women saw their decision to attend for HCV care as prompted by a) immediate crisis, b) gradual sequence of awareness, or c) medical intervention. Conclusion: The development of effective interventions and integrated models of care requires an understanding of the complex factors that shape women’s journey with HCV care. Improving women’s journey with HCV care will enhance their access to the new treatment regimes. Recommendations: A National HCV Strategy and comprehensive guidelines for care, treatment and prevention; HCV education throughout the healthcare system; and equitable and accessible healthcare for all women living with HCV.