Joanna Garstang

International comparison of sudden unexpected death in infancy rates using a newly proposed set of cause-of-death codes

Background Comparing rates of sudden unexpected death in infancy (SUDI) in different countries and over time is difficult, as these deaths are certified differently in different countries, and, even within the same jurisdiction, changes in this death certification process have occurred over time. Aims To identify if International Classification of Diseases-10 (ICD-10) codes are being applied differently in different countries, and to develop a more robust tool for international comparison of these types of deaths. Methods Usage of six ICD-10 codes, which code for the majority of SUDI, was compared for the years 2002–2010 in eight high-income countries. Results There was a great variability in how each country codes SUDI. For example, the proportion of SUDI coded as sudden infant death syndrome (R95) ranged from 32.6% in Japan to 72.5% in Germany. The proportion of deaths coded as accidental suffocation and strangulation in bed (W75) ranged from 1.1% in Germany to 31.7% in New Zealand. Japan was the only country to consistently use the R96 code, with 44.8% of SUDI attributed to that code. The lowest, overall, SUDI rate was seen in the Netherlands (0.19/1000 live births (LB)), and the highest in New Zealand (1.00/1000 LB). SUDI accounted for one-third to half of postneonatal mortality in 2002–2010 for all of the countries except for the Netherlands. Conclusions The proposed set of ICD-10 codes encompasses the codes used in different countries for most SUDI cases. Use of these codes will allow for better international comparisons and tracking of trends over time.

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

BackgroundThe death of a child is a devastating event for parents. In many high income countries, following an unexpected death, there are formal investigations to find the cause of death as part of wider integrated child death review processes. These processes have a clear aim of establishing the cause of death but it is less clear how bereaved families are supported. In order to inform better practice, a literature review was undertaken to identify what is known about what bereaved parents want from professionals following an unexpected child death.MethodsThis was a mixed studies systematic review with a thematic analysis to synthesize findings. The review included papers from Europe, North America or Australasia; papers had to detail parents’ experiences rather than professional practices.ResultsThe review includes data from 52 papers, concerning 4000 bereaved parents. After a child has died, parents wish to be able to say goodbye to them at the hospital or Emergency Department, they would like time and privacy to see and hold their child; parents may bitterly regret not being able to do so. Parents need to know the full details about their child’s death and may feel that they are being deliberately evaded when not given this information. Parents often struggle to obtain and understand the autopsy results even in the cases where they consented for the procedure. Parents would like follow-up appointments from health care professionals after the death; this is to enable them to obtain further information as they may have been too distraught at the time of the death to ask appropriate questions or comprehend the answers. Parents also value the emotional support provided by continuing contact with health-care professionals.ConclusionAll professionals involved with child deaths should ensure that procedures are in place to support parents; to allow them to say goodbye to their child, to be able to understand why their child died and to offer the parents follow-up appointments with appropriate health-care professionals.

An evidence-based guide to the investigation of sudden unexpected death in infancy

PurposeMany countries now have detailed investigations following sudden unexpected death in infancy (SUDI) but there is no clear evidence as to the most effective way to investigate SUDI. This systematic literature review addresses the following questions: What are the current models of practice for investigating SUDI? What is the evidence to support these investigative models? What are the key factors for effective SUDI investigation?MethodsThis was a systematic review of papers from Europe, North America, and Australasia, detailing models of SUDI investigation or the outcomes of SUDI investigations.ResultsThe review includes data detailing four different models of investigation: police-led, coroner or medical examiner-led, healthcare-led or joint agency approach models. There were 18 different publications providing evidence of effectiveness of these models. All models, with the exception of police-led models, have the potential to reach best practice standards for SUDI investigation. Key factors identified for effective SUDI investigation include the need for mandatory investigation, strong leadership, integration with coronial services, and for investigations to be provided by specialist professionals.ConclusionDetailed SUDI investigation should lead to greater understanding of why infants die and should help prevent future deaths. The challenge is now to ensure that local SUDI investigative practices are as effective as possible.

Rigour and rapport : a qualitative study of parents' and professionals' experiences of joint agency infant death investigation

BackgroundIn many countries there are now detailed Child Death Review (CDR) processes following unexpected child deaths. CDR can lead to a fuller understanding of the causes for each child’s death but this potentially intrusive process may increase the distress of bereaved families. In England, a joint agency approach (JAA) is used where police, healthcare and social services investigate sudden child deaths together and a key part of this is the joint home visit (JHV) where specialist police and paediatricians visit the home with the parents to view the scene of death. This study aimed to learn of bereaved parents’ experiences of JAA investigation following Sudden Unexpected Death in Infancy (SUDI).MethodsThis was a qualitative study of joint agency investigation of SUDI by specialist police, healthcare and social services including case note analysis, parental questionnaires, and in-depth interviews with parents and professionals. Families were recruited at the conclusion of the JAA. Data were analysed using a Framework Approach.Results21/113 eligible families and 26 professionals participated giving theoretical saturation of data. There was an inherent conflict for professionals trying to both investigate deaths thoroughly as well as support families. Bereaved parents appreciated the JAA especially for the information it provided about the cause of death but were frustrated with long delays waiting to obtain this. Many parents wanted more emotional support to be routinely provided. Most parents found the JHV helpful but a small minority of mothers found this intensely distressing. In comparison to JHVs, when police visited death scenes without paediatricians, information was missed and parents found these visits more upsetting. There were issues with uniformed non-specialist police traumatising parents by starting criminal investigations and preventing parents from accessing their home or collecting vital possessions.ConclusionsOverall most parents feel supported by professionals during the JAA; however there is scope for improvement. Paediatricians should ensure that parents are kept updated with the progress of the investigations. Some parents require more emotional support and professionals should assist them in accessing this.

G459(P) Improving the investigation of unexpected infant deaths

Aims Since 2008, in England, all unexpected infant deaths must be investigated jointly by police, health and social services. This study aims to learn of bereaved parents’ and professionals’ experiences of this joint agency approach (JAA) as well as assess the effectiveness of the JAA in determining causes and risk factors for deaths and use this knowledge to improve professional practice. Methods A mixed methods study of JAA investigation of SUDI cases in one English region; involving case note analysis, questionnaires and in–depth interviews with bereaved parents and the relevant professionals. A descriptive study of outcomes of JAA SUDI investigation using Child Death Overview Panel (CDOP) data. Results 23/111 families were recruited giving theoretical saturation. The median time between infants’ deaths and parental study participation was 33 weeks; data collection took place between 2011–3. 25 professionals were interviewed. CDOP Form Cs were obtained for 65/70 (93%) SUDI cases dying during 2010–2. Non–specialist police often arrived at the parents’ home along with the ambulance; increasing parental distress. Parents felt that the JAA provided information about why their baby died but offered minimal emotional support. The joint home visit by police and paediatrician is a key investigative process and most parents found this helpful. Final case discussions were used to discuss relevant risk factors but not to determine the cause of death; in nearly all cases the final cause of death relied on post–mortem examination alone ignoring findings of death scene examinations. Many deaths fitted the diagnostic criteria for SIDS but despite this were labelled as unascertained. Social care were only involved in 13/23 JAA investigations, in two cases without involvement there were safeguarding concerns. Some Coroners were reluctant to share post–mortem examination reports with paediatricians preventing effective JAA investigations. Conclusion Ideally, SUDI investigations should be carried out only by specialist clinicians who do this work frequently and the JAA fully integrated with social care and Coroners’ investigations. There needs to be a clearer system for classifying unexplained SUDI. Police should reconsider their immediate response to SUDI; parents would like more follow–up and bereavement support from professionals.

Qualitative analysis of serious case reviews into unexpected infant deaths

Objective To develop a detailed understanding of the circumstances of sudden unexpected death in infancy (SUDI) cases subject to serious case review (SCR). Design This was a thematic analysis of SCRs relating to cases of SUDI in England. SCRs were obtained for SUDI cases dying between 1 April 2011 and 31 March 2014. These were cases (aged 0–2 years) that presented as a SUDI and for which no clear medical or forensic cause of death was found. Results SCRs were held for 30 SUDI cases, published reports were available for 27/30. The median (range) age at death was 2 (0–19) months. Background risk factors in families included: alcohol or drug dependency in 18/27, parental mental health problems in 14/27, domestic abuse in 9/27 and parental criminal records in 13/27. Nineteen infants had received support from social care, 10/19 were subject to child protection plans. Neglect was a feature in 15/27 cases. Parents did not engage with professionals in 18/27 cases, involving social care in 14/18, health care in 13/18 and drug and substance misuse services in 5/18. Eighteen of 27 deaths occurred in highly hazardous sleep environments, 16/18 involved cosleeping and 13/16 cosleeping deaths occurred with parents who were intoxicated with alcohol or impaired by drugs. Conclusion Most SUDI cases occurred in hazardous sleep environments and are potentially preventable. They occurred in families well known to services with concerns about neglect, substance misuse and poor engagement. More consideration is needed on how best to support such vulnerable families.

G421 The current causes and risk factors for sudi

Aims Since 2008, in England, all unexpected child deaths undergo a multi-agency investigation with the aim of determining the complete cause of death; followed by review by local Child Death Overview Panels (CDOP). These new processes have yet to be evaluated. This study aims to determine the effectiveness of the multi-agency investigation and CDOP processes in ascertaining causes of death and risk factors following Sudden Unexpected Death in Infancy (SUDI) and to describe the profile of causes and risk factors. Methods We obtained the dates of birth and death of all SUDI cases from one English region, dying between 1 September 2010 and 31 August 2012. We contacted all 10 CDOP for copies of individual case reviews completed using the standard CDOP Form C. We extracted the age, cause of death and presence of modifiable factors for each case from the Form C and created a total family and environmental risk factor score by totalling the risk factors. Results Data were obtained for 65/70 (93%) SUDI cases. 20/65 (31%) deaths were due to medical causes; 21/65 (32%) due to SIDS and 24/65 (37%) classified as unascertained deaths. Reanalysis of case data suggested that 9 deaths were probably due to accidental asphyxia, with 6 of these involving parents co-sleeping with their infant after consuming excessive alcohol. Unascertained deaths had significantly higher total family and environmental risk factor scores (mean 2.6, 95% CI 2.0–3.3) compared to SIDS (mean 1.6, 95% CI 1.2–1.9), or medical causes for death (mean 1.1, 95% CI 0.8–1.3). 9/20 (47%) of medical deaths. 19/21 (90%) SIDS and 23/24 (96%) unascertained deaths were considered to be preventable. There were inadequacies in medical provision identified in 5/20 (25%) of medically explained deaths. Conclusions The new multi-agency child death processes are effective at determining cause of death and risk factors for SUDI but potential asphyxia deaths may not be recognised. Most deaths labelled as unascertained fulfilled diagnostic criteria for SIDS. Many SUDI occurred in families with mental illness, drug or alcohol misuse and chaotic lifestyles and most in unsafe sleep-environments.

G133(P) Improving Professional Practice After Unexpected Infant Death

Aims Since 2008, in England, all unexpected infant deaths must be investigated jointly by police, health and social services. This study aims to learn of bereaved parents’ experiences of this joint agency approach (JAA) and use this knowledge to improve professional practice. Methods Bereaved parents, whose unexpected infants’ deaths were investigated by a JAA were eligible to participate in the study. Case records from all agencies were analysed and parents were invited to complete questionnaires or have in-depth interviews. Data were analysed using a Framework Approach. Results There were 101 eligible families of whom 23 were recruited, 16 families had in-depth interviews, 5 completed questionnaires and 2 allowed case note access only. The median time between infants’ deaths and interview or questionnaire completion was 33 weeks; all interviews took place between 2011–3. Most families had mixed experiences of the JAA. In many cases uniformed police arrived at the home along with the ambulance; these police officers’ actions were often distressing. Parents were not allowed to go back into their homes to collect possessions; other relatives were required to leave the property immediately. Occasionally police separated parents from their baby. Nearly all families thought that they had been well cared for during their time at the Emergency Department. Most parents found the joint home visit by police and paediatrician to be a helpful experience; however for a few mothers it was deeply distressing to have to return home so soon after the death or talk further with professionals about events. Parents’ experiences of follow-up after the death varied; most welcomed the explanations as to why their baby died but complained of months waiting with no information or support. Some parents wanted help accessing emotional support, feeling unable to do this themselves. Conclusion Parents find the involvement of paediatricians in the JAA helpful; however there is scope for improvements in the way police and health staff respond. Paediatricians should ensure that parents are kept updated with the progress of the investigations. Some parents require more emotional support and professionals should assist them in accessing this.