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.

Being there: A scoping review of grief support training in medical education

“…At both the undergraduate and postgraduate levels, most of the training modules consisted of didactic teaching methods (e.g., lectures) paired with a variety of group activities, which are described in more detail below. Three studies also described the dissemination of information pamphlets, posters and reference materials on grief and depression [56–58]. These materials summarized the latest evidence and, in one case, were combined with voluntary study days or small group discussions and lecturers [58].…”

“…Three studies also described the dissemination of information pamphlets, posters and reference materials on grief and depression [56–58]. These materials summarized the latest evidence and, in one case, were combined with voluntary study days or small group discussions and lecturers [58].…”

What do bereaved parents want from professionals after the sudden death of their child: a systematic review of the literature

“…A study of patient satisfaction Parents of infants dying perinatally and in infancy Postal questionnaire survey or questionnaire distributed at support group 66% N = 28 USA A Hazzard, J Weston and C Gutterres [ 60 ] 1992 After a child's death: factors related to parental bereavement Parents of children dying of any cause at any age Structured interview Minimal data N = 45 USA J Krauel Vidal, M Silva Vazquez, M Ibanez Fanes, R Florensa Palau and J Moreno Hernando [ 59 ] (translated from Spanish) 1992 Attitude towards parents after the death of their newborn infant in a neonatal unit Parents of infants dying on neonatal units Postal questionnaire survey 100% N = 49 Spain H Laakso and M Paunonen-Ilmonen [ 59 ] 2002 Mothers’ experience of social support following the death of a child Mothers of children dying under age 7 years. Questionnaire and structured interview 50% N = 91 Finland A Livesey [ 51 ] 2005 A multiagency protocol for responding to sudden unexpected death in infancy: descriptive study Parents of infants dying suddenly and unexpectedly Postal questionnaire survey as part of audit of practice Minimal data N = 29 United Kingdom AJ Macnab, T Northway, K Ryall, D Scott and G Straw [ 23 ] 2003 Death and bereavement in a paediatric intensive care unit: Parental perceptions of staff support Parents of children dying on intensive care unit Questionnaire and structured interview 100% N = 24 Canada M McDonnell, A Cullen, B Kiberd, M Mehanni and T Matthews [ 52 ] 1999 A national model of care service for professionals dealing with sudden infant death Parents of infants dying of SIDS Structured interview 50% N = 13...…”

“…In one study 48% of parents thought the police were kind and helpful, but 30% felt they were unhelpful and treated parents as guilty and assumed that a crime had been committed [ 35 ]; another study commented on disproportionate police involvement [ 51 ]. Conversely, in Ireland, satisfaction with police services following SIDS is high with 86/100 parents finding police helpful [ 52 ] and 75% of 69 parents stating that police carried out the process of identification sensitively [ 53 ]. These results are surprising given that there is a similar level of involvement by UK and Irish police in SIDS cases.…”

“…Rates of hospital follow-up for bereaved parents were very variable ranging from 16% to 77% for SIDS [ 50 , 52 ], 77% for deaths on paediatric intensive care [ 56 ] and 92% for neonatal deaths [ 29 ]. Similar to the reference papers, in 13 studies parents stated that they would like more medical follow-up after all child deaths [ 14 , 17 , 18 , 27 , 29 , 31 , 38 , 47 , 50 , 57 – 60 ] and no study reported parents wanting less contact with professionals.…”