An estimated 5 million Americans are chronically infected with hepatitis B or C. They face socially and clinically significant reductions in mental and physical health. Improved coping and compliance with clinical therapies and harm-reducing behaviors can improve quality of life and, potentially, treatment outcomes. Motivation to join, participation, use, and usefulness of online and in-person hepatitis support groups was examined through observation and survey of group members and group leaders.
Members joined primarily to get information particularly about treatments, diet, and treatment side effects. They also joined to get support. All received support that was often hard to get elsewhere. Healthcare providers were generally the most used source of information, yet support groups were the most useful source of information. Members used the information and support obtained to make treatment and lifestyle changes such as initiating or ceasing treatment, eliminating alcohol consumption, increasing openness with family and friends, and discussing side effects with healthcare providers. Providers caring for hepatitis patients should consider recommending support groups to their patients and also participate in the groups to ensure that valid and reliable information is provided.