Metastatic Cancer Clinical Trial
Official title:
Online Narrative Interventions and Family Support for Advanced Cancer Patients
The investigators will test whether narrative life review and web-based social networking for
middle aged adults with advanced cancer will improve:
1. existential well being (and reduce psychological distress)
2. generativity and relationship quality, thereby mediating the intervention effects
The investigators will also conduct exploratory process analyses of each participant's social
network.
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.
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