Primary Biliary Cirrhosis (PBC) is a chronic and potentially fatal liver disease that primarily affects women in their middle years. Caregivers of people with PBC or other rare chronic ailments face a number of challenges; this study addresses responses to those challenges based on a survey and on messages posted to a listserv specifically for family members and friends of people who have PBC. Both revealed patterns related to life stage and gender. In general, husbands (many of them retired) reported readiness to accept changed circumstances and make behavioral adaptations, and they were unlikely to utilize online support opportunities. Female family members (many of them non-spouses) and friends were more likely to provide socio-emotional support and to use online support.
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