The needs of families of children with heart disease

The aim of the study was to assess the perceived needs of children with heart disease of their parents and siblings and to determine the support and services that the families were currently receiving. A mailed survey of 447 families of children with congenital or acquired heart disease was conducted. Completed questionnaires were received from 209 (46.8%) families, 124 (59%) of whom had unmet needs in one or more areas. Information was the area in which there was the greatest degree of expressed need. While the majority of families received support from family and friends, community-based statutory services and support were less adequate. However, a number of families who were not receiving support from community professionals did not want any intervention. It is concluded that interventions need to be targeted so that those families needing additional services and support receive them. Implications for the development of an evidence-based children's cardiac liaison nursing service are discussed.