The experience of women with primary biliary cirrhosis: a literature review

Primary biliary cirrhosis (PBC) is a serious and life-threatening illness that mainly affects women. Epidemiological data on the prevalence of the illness are unclear. The experience of women with this chronic illness has not been explored within nursing research. A review of the literature concerning PBC therefore is based on general themes relating to chronic illness, a chronic illness has two meanings: the symbolic significance and the consequences for the individual. The symbolic significance of PBC can be related to symbolism relating to the liver in general and to the general assumption that liver disease is related to alcohol consumption. The consequences for the individual woman with PBC have been described as following a disease management trajectory. This may include appreciating the major symptoms of the illness. The main symptoms of PBC are fatigue and pruritus. These are both insidious and debilitating symptoms of unclear aetiology that can cause women with PBC problems when seeking an illness explanation. The symptoms may also interfere with the woman's body image and her caring role. It is suggested that the factors that relate to PBC may result in social isolation for women with the illness.