There were over 1100 under 19s known to be infected with HIV living in the UK. The number of affected children, defined as those living in a family where one or more member is HIV infected, is unknown. Over the last decade, the number of women infected with the virus has quadrupled leading us to presume that there are at least 15-20,000 children affected by HIV in the UK.

A disproportionate number of children affected by HIV in the UK are asylum-seeking children whose parents were born in sub-Saharan Africa. Resources are likely to be limited. A high proportion live in one-parent families. Seventy per cent live in lone-parent-headed households, usually without extended family support, and may be separated from at least one parent and siblings.

Disclosure. Other than reproductive issues, the literature on the psychosocial impact of positive parenting is dominated by the issue of disclosure. This includes disclosure of the parent’s HIV status to children and disclosure of a child’s HIV status. In both these scenarios, many difficulties are associated with disclosing to children, particularly in cultural settings where the stigma of HIV is high, for example among some black African communities. The literature identifies the following reasons for non- disclosure:

• concerns about discrimination and stigma.
• fears that children may ‘tell’ indiscriminately.
• negative associations of HIV.
• cultural differences.
• concerns that children are too young and that disclosure may affect their development and well-being.
• the fact that telling is awkward.
• the belief that health is not sufficiently compromised and may not be in the future.
• the fact that disclosure is low on the list of priorities.

A study of 13 families with HIV-infected children attending a South London clinic (where 77% of the families were of African origin) found that parents thought that their child had a partial understanding of their illness and understood clinic visits and treatments. All considered that disclosure should wait until the child was old enough not to tell other people indiscriminately. Parents viewed disclosure as inevitable, but to be delayed as long as possible. They felt it should take place prior to teenage years, before the child became sexually active. Parents reported avoiding the subject as much as possible.

There is wide variability in the cultural ethnic and social composition of children and families living with HIV in the UK . Tensions may emerge between African traditions and modern UK concerns about childhood. The notion of children as people with rights does not fit well with more traditional cultural positions that emphasize parental rights. Balancing the two is a challenge for professionals working with African families in the UK.