STARBRIGHT World: Effects of an electronic network on the social environment of children with life-threatening illnesses

STARBRIGHT World (SBW) is a virtual environment designed to link seriously ill children into an interactive online community in which they can play games, learn about their medical condition, or talk with other chronically ill children. This study evaluated the impact of SBW on pain, mood, anger, loneliness, problem behavior, and willingness to return for treatment of children receiving outpatient treatment at the National Institutes of Health (NIH). To test the hypothesis that SBW provides benefit through distraction, a restricted alternating treatments design was utilized to measure anger, pain, and mood. To test the more long-term benefits of SBW, loneliness and problem behavior were measured at baseline and at the end of the study. Willingness to return was measured at each hospital visit made during the study. Process information was also collected during each SBW session (e.g., ease of use, frustration, and general enjoyment of the system). Thirty-two children participating in pediatric clinical trials at the NIH and their caregivers; participated in the study. Seventy-eight percent of participants, ages 8 to 19 years, were HIV infected and the remaining 22% had varied, but potentially life-threatening, illnesses. Children reported significantly less loneliness and were significantly more willing to return to the hospital for treatment from baseline to follow-up. They were marginally less worried after using SBW than after using the regular playroom. Parents reported that their children experienced significantly less withdrawn behavior and needed significantly less help with both anxiety and resistance in returning to the hospital for treatment after using SBW. They also reported that SBW helped their children to feel decreases inloneliness and depressed mood, and increases in energetic mood. SBW is a potentially useful tool to improve the hospital experience for seriously ill children, reduce their feelings of loneliness and isolation, and help them to be less socially withdrawn.