Judy Proudfoot*, Black Dog Institute, University of New South Wales, Sydney, Australia Track: Research Track Presentation Topic: Building virtual communities and social networking applications for patients and consumers Presentation Type: Oral presentation Submission Type: Single Presentation Building: MaRS Centre Room: Auditorium Date: 2008-09-04 01:30 PM – 03:00 PM Last modified: 2008-06-24

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Introduction
Bipolar disorder is chronic condition associated with significant
disability, with recent estimates suggesting a lifetime risk of 5%.
Relapse rates are high. Little is known about the experiences and
difficulties faced by consumers after receiving a diagnosis of bipolar
disorder, such as filtering and accessing reliable information, and the
degree to which these issues affect their ability and willingness to learn
how to take control of their illness.
Method
A qualitative study was conducted which explored the experiences of people
after receiving a diagnosis of bipolar disorder, as communicated online to
Informed Supporters (expert patients who have been managing their
bipolar disorder effectively for two years or more and are trained to
provide an apomediary function to those newly-diagnosed with the
condition). The study was part of a wider randomised controlled trial
evaluating an online psycho-education program. Supporter contact was
limited to two contacts per week per participant. No constraints were
imposed on the number of contacts initiated by participants nor on the
type of issues raised.
Results
Twenty-six participants with recently-diagnosed bipolar disorder discussed
issues and concerns online with Informed Supporters. Within the
bounds
of a serious mental illness, the nature of the interaction included
guiding participants to information, collaborating, providing emotional
support and giving practical advice. Participants found the apomediary
function very helpful. Issues raised included medication side-effects,
coping with symptoms, reaction to diagnosis, identifying early warning
signs and triggers, loss of sense of self, uncertainty about future and
stigma.
Discussion
Consumers are often reluctant to discuss issues of a personal nature with
their health professionals, yet these issues, if left unresolved, can
undermine take-up of effective treatments or lead to premature
discontinuation, which, in turn, can result in worsening symptoms and
reduced quality of life. Expert patients offer empathy, real-life
experience, credibility and practical advice. In addition to helping folk
with newly-diagnosed bipolar disorder navigate through the onslaught of
information about the condition, apomediaries in this context can help to
reduce feelings of isolation that often accompanies diagnosis and can
facilitate self-management and control of the condition.