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Judith N. Lasker, PhD, Ellen Sogolow, PhD, and Rebecca Sharim. Department of Sociology and Anthropology, Lehigh University, 681 Taylor Street, Bethlehem, PA 18015, 610-758-3811, jnl0@lehigh.edu
Background: This study focuses on the role of one Internet-based group for people who have an auto-immune liver disease that affects primarily women in their 40’s and older. The organization provides information and support through email lists, educational resources such as interviews online with medical specialists, and occasional conferences and local chapter meetings.
Method: This paper documents the history and activities of the organization, based on interviews with organizers, surveys of attendees at a national conference, and content analysis of messages posted to two listservs, one for people with chronic liver disease, and the other for their family members and friends. To analyze the posts, we developed a coding system with three major categories—biomedical, socio-emotional, and systems/organizations—and twelve codes in each category.
Results: Interviews and surveys illuminate the variety of ways in which the organization helps its members and their families. Analysis of the listservs reveals patients’ and families’ needs for biomedical information as well as for emotional support to deal with issues of depression, anxiety, and uncertainty. Since they are dealing with a relatively rare disease affecting primarily middle-aged and older women, the Internet offers a highly valued opportunity to connect with, learn from, and provide support to others having similar experiences.
Learning Objectives: At the conclusion of the presentation, the learner will be able to
Keywords: Chronic Illness, Women's Health
Presenting author's disclosure statement:
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.