Services for children with HIV/AIDS: the views of parents

In this qualitative study, the parents of ten children who attended an inner-London teaching hospital for HIV/AIDS were interviewed to find out their views on the services. Speaking from their own experiences, parents expressed a high level of satisfaction with the specialist paediatric care at the teaching hospital but had little confidence in the expertise of other hospitals or of GPs and health visitors. Few cases had been identified antenatally; the diagnosis of HIV/AIDS was often made only after the child had become ill and been investigated for a variety of diseases before being tested for HIV. The families felt considerable anxiety about the future, especially about what would happen if both child and parent were to become ill at the same time. The increasing number of HIV-infected mothers and children means that in future the caseload and expertise of the specialist centres will need to be shared with the primary health care team.