A national model of care service for professionals dealing with Sudden Infant Death

Abstract

Sudden Infant Death Syndrome (SIDS) is any death occurring in an infant or young child which is unexpected by history and in which a thorough post mortem examination fails to demonstrate an adequate cause of death. The National Sudden Infant Death Register collects information on all sudden unexpected deaths in infants and young children occurring in Ireland. In this study, a comparison was made between parent’s experience of professional services in the aftermath of their child’s death both before and after the implementation of a National Model of Care for professionals in 1995. In addition, a random sample of 105 professionals were surveyed about their knowledge of the Model of Care services. Results were grouped according to the parental experience of the emergency services, the hospital services, the community services and the bereavement support services offered to parents.

Prior to the implementation of the Model of Care Service (MOC) (1992–1994), 14 per cent of families stated that they did not find the Gardai helpful. After the Model of Care, only 7 per cent of parents expressed such dissatisfaction. Prior to the MOC, only 3 per cent of Gardai provided families with an information booklet on sudden infant death but afterwards, 23 per cent of Gardai did so. After the MOC families were more likely to have been given the opportunity to hold their infant, were given more privacy and were offered more keepsakes of their infant. Only 46 per cent of families were offered momentos of their baby prior to the MOC as compared to 84 per cent after the implementation of the MOC. They were also more likely to perceive the ancillary services such as the Gardai in a more positive light, where 22 per cent of Gardai offered the family the ISIDA support booklet compared to a previous 3 per cent. Over 50 per cent of parents were provided with a special room in the hospital following the MOC as opposed to a previous 48 per cent. Twenty-one per cent of parents prior to the MOC described the conditions in the hospital as awful, poor or fair, however 31 per cent of parents stated this after the MOC.

While there have been improvements in certain areas, there still remains considerable variation in the quality of service provided to all parents. Specifically, we need to address the fact that 16 per cent of parents still report a difficulty in obtaining post-mortem information. Almost 40 per cent said they had little input into how their child was dressed or laid out at this highly emotive time. Over one-third of parents stated they were concerned about how few of their primary health providers, namely general practitioners and public health nurses called to visit them in the aftermath of this tragic event.