Young people who have acquired the infection from their mothers have different needs to young people who have become infected later in life through sexual activity or drug use.

The majority of vertically infected children will have been attending hospital for many years.

Initially they were not expected to live very long and their experiences will be very different from those of their peers. Voluntary and statutory agencies are now having to re-examine the services they offer to meet the specific needs of these young people.

Children and young people with vertically acquired HIV infections are now living longer lives with reasonable health and functions and the condition needs to be thought of as a chronic lifelong one. However, the needs and consequences of living with HIV are not static and adolescents have increasingly complex and changing needs.

These children are vulnerable to the effects of both HIV infection and also medicines. For example approximately 10% of children have neurological consequences from the early effects of HIV on the developing brain and CNS. Whilst these may be mild in their effects on functioning, there are some children with severe impairments of mobility and access to ordinary independence. There are increasing numbers who are struggling with the learning and social demands of school and accessing help can be difficult given the anxiety that still surrounds disclosing the diagnosis. There are a small but increasing number with other diagnoses as well as HIV, affecting physical and or mental health. Some will be consequences of living with HIV e.g. lymphomas but others have complex multi factorial causes e.g. anorexia.

Adolescence may be a particularly challenging time as these children face many obstacles during their transition to adulthood and autonomy.

Providing multidisciplinary approaches to care within the community as well as in health settings and which can address other disabilities and difficulties as well as direct HIV care must remain a priority for all service provision and developments for this population.

This is particularly relevant in healthcare terms in the UK. Defining adolescence is a difficult concept, however in the UK adolescence is generally considered as young people between 13-16 years of age.

All clinics should be providing transitional or adolescent clinics for young people infected with HIV.

‘Transitional’ care is the term used to describe the transfer of medical care from paediatric to adult HIV services. The process of transition may take place over several years starting in the pre-teen years when the young person is aware of their diagnosis.

The majority of HIV-infected children who attend clinics in the UK have been vertically infected and are now considered as living with a chronic condition. However it cannot be forgotten that some may have been infected as a result of sexual exposure at a young age. Many young people with HIV infection are from families of sub-Saharan African origin but have grown up in the UK. This pull between two cultures can be a source of potential conflict within families and must be recognised.

A number of issues must be considered when working with older children infected with HIV. This will enable a comfortable transition to adult services when the young person is ready.

The process of transition can begin in middle childhood and progresses through adolescence at a speed appropriate for each child and their family. There are a number of issues, which make transition to adult care particularly difficult for this population and need consideration:

• Many of the children currently in early adolescence were diagnosed to have HIV before effective treatment was available and initially were not expected to survive beyond early childhood. This has resulted in a tendency for families, and services, to shelter or overprotect these children. In turn this adds extra strain on the processes of independence, autonomy and self-esteem which are developing during adolescence.
• Most of the children attending clinics have parents who are from African countries where the expectations for young people may be very different from what they observe in their peers in the UK. These differences may be further heightened by gender expectations and religious beliefs. Conflicts within the family relationships are generally more frequent during adolescence and may be exacerbated by these issues and those relating to HIV.
• A diagnosis of HIV is still a stigmatising diagnosis for many families and parents may find it extremely hard to share this with their child. Without this knowledge it is not be possible for the child to progress completely through the transition process.