Abstract â–¡ 45

The Care of Next Infant (CONI) programme provides support for families with children born subsequent to a cot death. It is a collaboration between the voluntary sector and statutory health services with core funding from the Foundation for the Study of Infant Deaths and professional time provided by the health service. The programme is available in 85% of the community health trusts in England, Wales and Northern Ireland.

Each centre has a local co-ordinator and paediatrician to oversee the programme. Parents are identified during a subsequent pregnancy and are offered a choice of support measures: weekly home visits from the health visitor (community health nurse); symptom diaries; weighing scales; weight chart; apnoea monitor and room thermometer. Thus the programme offers a basic framework which can be modified to suit the needs of each family. It is offered for at least 6 months or two months beyond the age of the previous cot death when this occurred late.

CONI has been available since 1989. Analysis of records of the first 5000 babies to complete the programme shows that 97% of parents found the programme helpful: 86% parents chose to use an apnoea monitor and 48% to use scales: the symptom diary is used by 80% families and 95% chose to have their health visitor visit weekly.

Parental ranking of the elements of the programme in order of their value consistently placed the equipment chosen first, the visit by the health visitor second and above all the other elements and professional contacts. Comments show that the health visitor is valued as a skilled and informed listener reinforcing the importance of the home as opposed to clinic contact with the family.

The programme has been successful in supporting anxious parents and has been extended to include other anxious parents i.e. the parents of ALTE babies, parents who have had a cot death in a close relative and parents with a previous post perinatal death from other causes after discharge from the neonatal or post natal unit. Thus, while the number of children presenting as cot deaths has diminished, the number of families entering the programme remains at approximately 800 per year.