Inspiring youths to engage in cancer treatment through a multi-user online environment
By Mette Terp Høybye, M.Sc., PhD, Dept. of Psychiatry and Behavioral Sciences, Stanford University School of Medicine
and Henrik Bennetsen, M.Sc., Associate Director, Humanities Lab, Stanford University
Objective of the work
This work proposes to develop a behavioral intervention seeking to increase adherence to cancer treatment and alleviate social isolation through an immersive online real-time multi-user environment for adolescents and young adults with cancer. By creating an avatar to represent themselves and their illness experience they will in this online environment design and modify the representation of self to their desire, complete with strengths, weaknesses and even idiosyncrasies, all while connecting and learning with similar others.
Cancer incidence in children, adolescent and young adults has increased over time to become the leading cause of non-accidental death in this age group. Development of effective treatment protocols in the past two decades has dramatically reduced childhood cancer mortality rates to an 80% survival in the first five years. Still, adolescent and young adults have not shown comparable benefits. Suboptimal treatment adherence is believed to contribute to this disparity. Studies have shown that adolescents and young adults with cancer often fail to adhere to prescribed treatment regimens, especially self-administered treatments such as oral chemotherapy.
The intense treatment of these patients requires frequent hospitalization and even isolation. In this time of developmental transition from child to adult, harsh cancer treatment regiments deeply challenge their sense of self and body. Patients experience difficulties in sustaining a life with normal activities such as school, sports and friends.
From behavioral intervention studies, we know that computer games and other interactive multi-media tools may affect and change behavior in children with cancer and alleviate the stressful experience of cancer. Targeting the problem of treatment adherence a previous randomized study showed, that playing a video game specifically designed for adolescent and young adults with cancer can increase knowledge of cancer and self-efficacy, directly resulting in increased adherence to cancer treatments. This promises great potential for utilizing new social media and games in psychosocial cancer treatment.
Key technologies and innovation in this work
Using the Sirikata platform, which grew out of several years of research at Stanford University, this work will develop and test an immersive online real-time multi-user environment for adolescents in cancer treatment. Sirikata is an open-end platform that can support a variety of use scenarios. This implementation of new technology sets the project apart from previous studies of the use of games in relation to health behavior.
We know adolescents and young adults to be very active and skilled media users, both as consumers and creators of content. The basic intention in this work is to interact with this group of cancer patients across the media platforms they are already familiar with. Given the established potential of the Sirikata platform, we will be able to design a rich 3D application that can run from any newer internet browser, and that can be embedded in popular media platforms like Facebook, Twitter and MySpace, creating ample opportunity for user access.
Development and research plan
Phase I: – development of online environment in Sirikata – early pilot-testing with patients – ethnographic observations – discussion of results with clinical partners.
Phase II: – adjustment and development – definition of in-world research elements (e.g. questionnaires and cognitive-behavioral assignments) – feasibility study. Testing study set-up with regard to clinical partnerships and recruitment.
Phase III: – proof-of-concept – randomized study with approximately 500 adolescent and young adult cancer patients
Download this proposal in PDF Format