‘We just want to be a normal family…’. Paediatric HIV/AIDS services at an inner-London teaching hospital

Abstract

The nature of the HIV epidemic in the UK is changing with the increasing number of infected women and children. This recent onset means that there are few data about the specific problems of HIV in families. This study examines current issues in service provision to HIV infected children and their families at an inner-London teaching hospital. A sample of ten families were interviewed, from a caseload of approximately 100 HIV-positive children. Of the ten children, seven were under the age of 5 years. All the children were vertical transmissions and six of the mothers were from Sub-Saharan Africa. Only three of the ten children were identified antenatally. In terms of service provision, families were very satisfied with the care provided by the study hospital's paediatric HIV team but felt that the hospital's paediatric and adult HIV services were poorly co-ordinated and impractically located over different sites. Families did not have confidence in GP and community services, preferring to use hospital services which they felt to have more expertise in paediatric HIV. Future policy developments will have to confront the hospital-centred nature of paediatric HIV services and develop primary and community care services.