Multi-disciplinary teams will have helped to support parents in providing explanations and information for their child about what is happening from a young age.

The very young child will want explanations about what happens at the hospital especially why they have blood taken or have to take medicines. Later it is possible to talk about goodies and baddies in the blood and sometimes about viruses or bugs. Providing truthful explanations, appropriate to the age and maturity of the child but which do not name the diagnosis are possible when the child is young. These can help build an understanding of health and illness. However by early adolescence it becomes increasingly important that a full and open discussion which includes the diagnosis can take place. This enables the young person to feel involved and participate in decisions and feel more in control of treatments and care. It can also help allay any confusion about what is happening to them and provides an opening for the young person to talk about any fears or concerns that they may have about themselves and the future.

Self-esteem and independence are developing during adolescence and knowledge enables these processes to continue and expand. Those young people who have been fully informed about their diagnosis mention the importance of hearing this information from their parent or at least with the parent’s involvement and agreement. Planning and supporting the family and youngster during the sharing and afterwards helps the adjustment to the news and reduces long term anxiety. Situations where the young person found out or was told inappropriately have always been more upsetting.

Whilst recognising that by the ages of 12-13 most young people with HIV should have had a full and open discussion about their diagnosis there will always be circumstances which mean that exceptions will occur. The stigma which still surrounds this diagnosis and the family impact, where other family members are HIV-positive or may have died from the condition, increases anxiety about sharing the knowledge with children often for fear of who else will get to know.

Particular situations in which the sharing of the diagnosis is more difficult include those where the family live in very isolated circumstances, where the parent or carer has strong beliefs that it is wrong for the child to know and would not support them knowing and where the child has a learning or cognitive difficulty. In all these cases it may be that progress through the transitional care will be delayed or take longer. However it is likely that transition to adult services would be delayed in all of these kinds of situations anyway.