Trial Information

Online Narrative Interventions and Family Support for Advanced Cancer Patients

Middle aged patients with advanced cancer report more distress, and active search for
meaning and personal growth than older and/or early stage patients. Nonetheless, such
positive growth is far from typical and interventions help. Expert-guided life review
reduced distress for hospice patients, but is not widely accessible—and many patients lack
the energy or skill to write their own life story. Online cancer information and support
expert systems improve quality of life. Patients are increasingly developing their own
social networks, but many lack the skills to do so. Moreover the effects on social
networking on patient well-being have not been studied.

"My Living Story" elicits a dignity-enhancing life story via a telephone interview (based on
Chochinov, JAMA 2002), and delivers the edited transcript on the patient's personal
miLivingStory social network. miLivingStory links to a life review education website (called
miStory) with links to high quality cancer information, support and interactive planning
tools.

We hypothesize that telling, revising and sharing the life story with one's selected social
network will improve the patient's existential well-being and reduce their distress.
Furthermore, we hypothesize that these effects will be mediated by My Living Story's effects
on improving the patient's sense of legacy (generativity) and the quality of their
relationships. Our exploratory observational analyses of each individual miLivingStory
network will contribute to an understanding of how social network configuration and
communication patterns correlate with measured outcomes

We will recruit and randomize 100 patients with advanced cancer. The control group will
receive a personalized web portal (called miOwnResources) with links to high quality cancer
information, social support and interactive planning tools, and a feature to add their own
links. All participants will sign informed consent forms, complete a pre-test survey and
post-tests at tow and four months.