Children who are HIV-positive or live with a family member who has the virus lead double lives, withholding the information from teachers and even from friends and extended family because of fear of ostracism and discrimination.
In the first-ever study of affected parents' and children's views, in-depth interviews were carried out with 30 children and young people aged from five to 18. Seven are themselves infected and the others live with a relative who has HIVAids.
The picture that emerged was one of children living with social isolation, loneliness and the burden of keeping a family secret. Some avoided making close friends because they couldn't trust anyone enough to tell them.
Almost all the children reported being bullied at school and having to lie to protect themselves and their families. One girl, when asked why her mum was in hospital, said it was "her kidneys or something". Children often have problems with schoolwork because of absence due to the illness, or have trouble concentrating.
The researcher found that, although telling the school would ensure the child received the extra support they needed, parents didn't want to for fear that word would spread and that staff and other pupils would discriminate against the child. For many parents and children, she concludes, fear of disclosing HIV-positive status is a bigger problem than living with the disease itself.
Afraid to Say: the needs and views of young people living with HIVAids by Elizabeth Lewis, available from the National Children's Bureau, 8 Wakley Street, London EC1V 7QE. Tel: 020 7843 6029. Price pound;20 or pound;12 for NCB members. Two guides for parents and children living with HIV: Getting Help: a guide to London support services for children and families living with HIV and When someone in my family has an illness called HIV are available from NCB free to parents children, price pound;5 to professionals