1. What if we could alleviate the profound social isolation experienced by teenagers and young adults with cancer?
2. Could we inspire them to engage their cancer treatment continuously by providing new spaces of action?
3. Might we help them create knowledge of cancer in creative and innovative ways?
These compelling questions drive our project to create an immersive online real-time multi-user environment for adolescents and young adults with cancer. This platform will serve as a behavioral intervention seeking to increase adherence to cancer treatment and alleviate social isolation.
The intense treatment of the young patients requires frequent hospitalization and even isolation; making sustaining a life with normal activities such as school, sports and friends very difficult. In this time of developmental transition from child to adult, harsh cancer treatment regiments deeply challenge their sense of self and body. At a time in life when they are seeking independence from their parents these patients find themselves needing to become strongly dependent on their parents once again.
Often the young cancer patients do not meet age-appropriate support in hospitals and treatments that are designed for either pediatric or adult cancer patients. Development of effective treatment protocols in the past two decades has dramatically reduced childhood cancer mortality rates, resulting in 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. With traditional means failing; a fresh approach should be taken.
From behavioral intervention studies, we know that computer games and other interactive multi-media tools may affect and change behavior in youth with cancer and help alleviate the stressful experience of cancer. Targeting the lack 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.
Further, recent years have shown a rise in the use of Internet based communities among cancer patients as a venue for support and information. This promises great potential for utilizing social media and games in psychosocial cancer treatment. 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 using.
The open source Sirikata technology platform grew out of years of research at Stanford University undertaken by participants in this project. Leveraging this we are designing a rich 3D application that can run in any modern web browser without additional installation of software. Through embedding in popular social media platforms such as Facebook and MySpace we have a unique opportunity to engage the youth where they already are.
Combining the strengths of a rich 3D environment with the networks and communities created in social media, we anticipate to develop an intervention that will be immersive and engaging to the young cancer patients.
Development and research plan
Phase I: – development and design of the online environment in Sirikata – early pilot testing with patients – ethnographic observations and evaluation – discussion of results with clinical partners.
Phase II: – adjustment and development – definition of in-world learning and 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 400 adolescent and young adult cancer patients.
We have been successful in attracting the first pilot funding to the study from the Danish Child Cancer Foundation. This grant has gotten us started with the development of the very first and simple place in this online environment that we will be pilot-testing with young cancer patients by the end of 2010.