Caregivers' expectations of services at Baragwanath Hospital, Soweto and their understanding of the child's disability

Sixty-one caregivers were interviewed before and after their first visit with the child in their care to specialist neurodevelopmental outpatient clinics at Baragwanath Hospital, Soweto. The interview focused on their understanding of the child's disability and their expectations of the service offered at the clinics. Before consultation the majority of caregivers had a fair understanding of the child's functional problems and the short-term complications, but after the consultation levels of understanding decreased significantly. Caregivers left the consultation with a significantly improved understanding of the aetiology of the problem. Understanding of long-term complications did not differ significantly before and after the consultation. These findings may reflect the consultative process, as professionals may be more comfortable discussing aetiology than long-term complications. Caregivers in a state of shock may be unable to absorb all the information given, and translation during consultation may also be a confounding factor. Even though more than half the caregivers had no idea what services the clinics offered prior to the consultation, the majority (81%) indicated they were satisfied with the service after the consultation.