Irrespective of the severity of the disease, the presence of a cardiac malformation has an impact on everyday life for a significant number of children and families, particularly if associated with other problems with health. Implications for targeting resources to reduce morbidity in these children and families are discussed.
Young people's views need to be taken into account at all stages of the patient journey. They want an individualised approach to their care which recognises that they have specific emotional and practical needs. Such findings need to be incorporated into an ongoing model of care.
A broad training package is essential: training in administration of adrenaline is only one aspect, and emphasis is placed on education, recognition of allergic reactions and prevention. The presence of children in school needing access to adrenaline is no longer perceived as a problem in our area. We recommend other health authorities provide a similar service.
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.
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