Disclosure of Diagnosis

CASE: Jimmy is an 8-year-old boy with hepatitis B, e antigen (HBeAg)-positive, HIV and hepatitis C negative, who was adopted from Vietnam when he was 5 years and has been followed in your primary care practice since that time. Before adoption, he lived in an orphanage, where he was placed soon after birth. Jimmy currently lives with his adoptive mother and grandparents. His adoptive father has amyotrophic lateral sclerosis and recently moved to a nursing home due to a need for more intensive care. Jimmy continues to see him regularly. Jimmy's mother presents today upset about a recent encounter with his hepatologist. During this visit, Jimmy's doctor was insistent that Jimmy should be told about his illness immediately. He felt that Jimmy “had a right to know” and that it was important for the protection of other children. Jimmy's family practices universal precautions and Jimmy is compliant with these safety measures. Jimmy's mother has chosen not to share his diagnosis with the school and in addition has not felt the time was right to disclose the diagnosis to Jimmy. He is asymptomatic, takes no medications, and is followed yearly by a hepatologist. His mother is concerned that Jimmy would have difficulty managing this information and maintaining a “secret.” However, she also worries that he may feel his trust has been violated if she delays telling him. Jimmy is currently 8 years old, in second grade, and is struggling academically with math and reading. Socially, he is reported to have difficulty making friends and reading social cues. For example, he displays inappropriate boundaries, often standing too close or touching others, which has resulted in children avoiding him. During your annual visit, Jimmy presented as a friendly and engaging boy. He maintained conversation about school and some of his interests, but he was often distractible, impulsive, at times grabbing things, and fidgety, frequently standing up and then sitting back down. Jimmy's mother reports that this behavior is similar to what he exhibits in the classroom. He is currently receiving English as a Second Language services and is enrolled in a weekly “lunch bunch.” What advice would you give the family?