Infant death from accidental suffocation and strangulation in bed in England and Wales:rare or unrecognised events?

Background: Mandatory joint police and healthcare investigations of sudden unexpected death in infancy (SUDI) have been in place since 2008 in England. These include death scene examination with cause of death determined at multiprofessional case conference. Detailed evidence on sleep arrangements is available for most cases potentially leading to more being identified as due to accidental suffocation. SUDI remaining unexplained following investigation are classified as SIDS (sudden infant death syndrome) or unspecified deaths. Our objective was to determine whether detailed SUDI investigation has led to an increase in deaths classified as accidental suffocation or strangulation in bed (ASSB)? Methods: We obtained official mortality data for England and Wales for infants dying aged 0–364 days for International Statistical Classification of Diseases and Related Health Problems, 10th revision codes R95 (SIDS), R96, R98, R99 (unspecified causes of mortality) and W75 (ASSB) for the years 2000–2019. We calculated the mortality rate for ASSB, SIDS and unspecified causes based on total live births each year. Results: Unexplained SUDI decreased from 353 in 2000 to 175 in 2019, with the mortality rate falling from 0.58 to 0.29 per 1000 live births. The total postneonatal mortality rate fell during this time from 1.9 to 0.9 per 1000 live births suggesting this is a genuine fall. SIDS accounted for 70% of unexplained SUDI in 2000 falling to 49% in 2020 with a corresponding increase in R99 unspecified deaths. Few deaths were recorded as ASSB (W75), ranging between 4 in 2010 and 24 in 2001. The rate for ASSB ranged from 0.6 to 4.0 per 100000 live births. Conclusions: There is a shift away from SIDS (R95) towards unspecified causes of death (R96, R98, R99). Improved investigation of deaths has not led to increased numbers of death identified as due to ASSB. There needs to be clear guidelines on accurate classification of deaths from ASSB to facilitate learning from deaths and inform prevention efforts

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

Purpose: Many 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? Methods: This was a systematic review of papers from Europe, North America, and Australasia, detailing models of SUDI investigation or the outcomes of SUDI investigations. Results: The 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. Conclusion: Detailed 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

Parental understanding and self-blame following sudden infant death : a mixed-methods study of bereaved parents' and professionals' experiences

Objectives: Improvements in our understanding of the role of modifiable risk factors for sudden infant death syndrome (SIDS) mean that previous reassurance to parents that these deaths were unpreventable may no longer be appropriate. This study aimed to learn of bereaved parents' and healthcare professionals' experiences of understanding causes of death following detailed sudden unexpected death in infancy (SUDI) investigations. The research questions were: How do bereaved parents understand the cause of death and risk factors identified during detailed investigation following a sudden unexpected infant death? What is the association between bereaved parents' mental health and this understanding? What are healthcare professionals' experiences of sharing such information with families? Design: This was a mixed-methods study using a Framework Approach. Setting: Specialist paediatric services. Participants: Bereaved parents were recruited following detailed multiagency SUDI investigations; 21/113 eligible families and 27 professionals participated giving theoretical saturation of data. Data collection: We analysed case records from all agencies, interviewed professionals and invited parents to complete the Hospital Anxiety and Depression Scale (HADS) and questionnaires or in-depth interviews. Results: Nearly all bereaved parents were able to understand the cause of death and several SIDS parents had a good understanding of the relevant modifiable risk factors even when these related directly to their actions. Paediatricians worried that discussing risk factors with parents would result in parental self-blame and some deliberately avoided these discussions. Over half the families did not mention blame or blamed no one. The cause of death of the infants of these families varied. 3/21 mothers expressed overwhelming feelings of self-blame and had clinically significant scores on HADS. Conclusions: Bereaved parents want detailed information about their child’s death. Our study suggests parents want health professionals to explain the role of risk factors in SIDS. We found no evidence that sharing this information is a direct cause of parental self-blame

Rigour and Rapport: a qualitative study of parents’ and professionals’ experiences of joint agency infant death investigation

Background: In 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). Methods: This 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. Results: 21/113 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. Conclusions: Overall 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

Why did my baby die? : an evaluation of parental and professional experiences of joint agency investigations following sudden unexpected death in infancy

Aims: Since 2008, in England, all sudden unexpected deaths in infancy (SUDI) must be investigated jointly by police, health and social care. This thesis aims to learn of parents’ and professionals’ experiences of this joint agency approach (JAA) and use this knowledge to improve these investigations. Methods: 1. Systematic literature review of bereaved parents’ experiences. 2. Systematic literature review of different models of SUDI investigation. 3. A mixed methods study of JAA investigation of SUDI cases; involving case note analysis, questionnaires and in-depth interviews with parents and professionals. 4. A descriptive study of outcomes of JAA SUDI investigation using Child Death Overview Panel (CDOP) data. Results: In the mixed methods study, 23/111 families were recruited giving theoretical saturation; the median time between death and parental study participation was 33 weeks. Parents felt that the JAA provided information about the death but offered minimal emotional support; they were often distressed by non-specialist police attending their home as part of the investigation. The joint home visit by police and paediatrician was shown to be a key investigative process. Social care were only involved in 13/23 JAA investigations. Some coroners were reluctant to share information with paediatricians preventing effective JAA investigations. In the CDOP study were obtained for 93% SUDI cases. Final case discussions were used to discuss 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 and ignored death scene examination findings. Many deaths were labelled as unascertained despite fulfilling diagnostic criteria for SIDS. Conclusion: Ideally, SUDI investigations should be carried out only by specialist clinicians who do this work frequently and the JAA should be 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

Improving professional practice in the investigation and management of intrafamilial child sexual abuse: Qualitative analysis of serious child protection reviews

Background: Local multi-agency case reviews are regularly held in England when children have suffered significant harm from abuse or neglect, including from child sexual abuse (CSA). Most CSA takes place within families, is common but under-reported and can cause long-term harm. Objective: The aim was to analyse English child protection reviews relating to intrafamilial CSA to identify improvements for professional practice. Participants and setting: Local Child Safeguarding Practice Reviews (LCSPRs) and Serious Case Reviews (SCRs) relating to serious incidents of intrafamilial CSA occurring between 01 April 2017 and 31 March 2020. Methods: LCSPRs and SCRs were obtained from the National Case Review Repository and thematically analysed. Results: There were 243 reviews, of which 25 featured intrafamilial CSA. The main themes related to perpetrators, vulnerable families, and professional practice. Half of perpetrators were known by services to have previously abused children, but issues with professional practice enabled them to continue. Most children did not disclose CSA verbally showing challenging or sexualised behaviour; but professionals lacked knowledge and confidence on how to intervene without verbal disclosure, which limited safeguarding actions. Non-engagement by families with services was common, with some non-abusing parents complicit in abuse and deception. Significant neglect occurred in half the families, which diverted professional attention away from CSA. Conclusion: CSA is deliberate abuse of children involving considerable deception by perpetrators in contrast to some other types of child abuse. This difference in abuser behaviour makes child protection more difficult, particularly when professionals do not recognise and respond to children's non-verbal disclosures

Interventions to Improve Safer Sleep Practices in Families With Children Considered to Be at Increased Risk for Sudden Unexpected Death in Infancy:A Systematic Review

Background: Advice to families to follow infant care practices known to reduce the risks of Sudden Unexpected Death in Infancy (SUDI) has led to a reduction in deaths across the world. This reduction has slowed in the last decade with most deaths now occurring in families experiencing social and economic deprivation. A systematic review of the literature was commissioned by the National Child Safeguarding Practice Review Panel in England. The review covered three areas: interventions to improve engagement with support services, parental decision-making for the infant sleep environment, and interventions to improve safer sleep practices in families with infants considered to be at risk of SUDI. Aim: To describe the safer sleep interventions tested with families with infants at risk of SUDI and investigate what this literature can tell us about what works to reduce risk and embed safer sleep practices in this group. Methods: Eight online databases were systematically searched in December 2019. Intervention studies that targeted families with infants (0–1 year) at increased risk of SUDI were included. Studies were limited to those from Western Europe, North America or Australasia, published in the last 15 years. The Quality Assessment Tool for Studies with Diverse Designs was applied to assess quality. Data from included studies were extracted for narrative synthesis, including mode of delivery using Michie et al.'s Mode of Delivery Taxonomy. Results: The wider review returned 3,367 papers, with 23 intervention papers. Five types of intervention were identified: (1) infant sleep space and safer sleep education programs, (2) intensive or targeted home visiting services, (3) peer educators/ambassadors, (4) health education/raising awareness interventions, (5) targeted health education messages using digital media. Conclusion: Influencing behavior in families with infants at risk of SUDI has traditionally focused on “getting messages across,” with interventions predominantly using education and awareness raising mechanisms. This review found evidence of interventions moving from “information giving” to “information exchange” models using personalized, longer term relationship-building models. This shift may represent an improvement in how safer sleep advice is implemented in families with infants at risk, but more robust evidence of effectiveness is required. Systematic Review Registration: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/901091/DfE_Death_in_infancy_review.pdf, identifier: CRD42020165302