Investigating sudden unexpected deaths in infancy and childhood and caring for bereaved families : an integrated multiagency approach

The sudden unexpected death of an infant or child is one of the worst events to happen to any family. Bereaved parents expect and should receive appropriate, thorough, and sensitive investigations to identify the medical causes of such deaths. As a result, several parallel needs must be fulfilled. Firstly, the needs of the family must be recognised—including the need for information and support. Further, there is the need to identify any underlying medical causes of death that may have genetic or public health implications; the need for a thorough forensic investigation to exclude unnatural causes of death; and the need to protect siblings and subsequent children. Alongside this, families need to be protected from false or inappropriate accusations. Limitations in the present coronial system have led to delays or failures to detect deaths caused by relatives, carers, or health professionals. Several recent, highly publicised trials have highlighted the possibilities of parents facing such accusations. As a result of this the whole process of death certification has come under intense scrutiny. We review the medical, forensic, and sociological literature on the optimal investigation and care of families after the sudden death of a child. We describe the implementation in the former county of Avon of a structured multiagency approach and the potential benefits for families and professionals

Major epidemiological changes in sudden infant death syndrome : a 20-year population-based study in the UK

Background Results of case-control studies in the past 5 years suggest that the epidemiology of sudden infant death syndrome (SIDS) has changed since the 1991 UK Back to Sleep campaign. The campaign's advice that parents put babies on their back to sleep led to a fall in death rates. We used a longitudinal dataset to assess these potential changes. Methods Population-based data from home visits have been collected for 369 consecutive unexpected infant deaths (300 SIDS and 69 explained deaths) in Avon over 20 years (1984—2003). Data obtained between 1993 and 1996 from 1300 controls with a chosen “reference” sleep before interview have been used for comparison. Findings Over the past 20 years, the proportion of children who died from SIDS while co-sleeping with their parents, has risen from 12% to 50% (p<0·0001), but the actual number of SIDS deaths in the parental bed has halved (p=0·01). The proportion seems to have increased partly because the Back to Sleep campaign led to fewer deaths in infants sleeping alone—rather than because of a rise in deaths of infants who bed-shared, and partly because of an increase in the number of deaths in infants sleeping with their parents on a sofa. The proportion of deaths in families from deprived socioeconomic backgrounds has risen from 47% to 74% (p=0·003), the prevalence of maternal smoking during pregnancy from 57% to 86% (p=0·0004), and the proportion of pre-term infants from 12% to 34% (p=0·0001). Although many SIDS infants come from large families, first-born infants are now the largest group. The age of infants who bed-share is significantly smaller than that before the campaign, and fewer are breastfed. Interpretation Factors that contribute to SIDS have changed in their importance over the past 20 years. Although the reasons for the rise in deaths when a parent sleeps with their infant on a sofa are still unclear, we strongly recommend that parents avoid this sleeping environment. Most SIDS deaths now occur in deprived families. To better understand contributory factors and plan preventive measures we need control data from similarly deprived families, and particularly, infant sleep environments

Responding to unexpected infant deaths : experience in one English region

New national procedures for responding to the unexpected death of a child in England require a joint agency approach to investigate each death and support the bereaved family. As part of a wider population-based study of sudden unexpected deaths in infancy (SUDI) we evaluated the implementation of this approach. Methods: A process evaluation using a population-based study of all unexpected deaths from birth to 2 years in the South West of England between January 2003 and December 2006. Local police and health professionals followed a standardised approach to the investigation of each death, supported by the research team set up to facilitate this joint approach as well as collect data for a wider research project. Results: We were notified of 155/157 SUDI, with a median time to notification of 2 hours. Initial multi-agency discussions took place in 93.5% of cases. A joint home visit by police officers with health professionals was carried out in 117 cases, 75% within 24 hours of the death. Time to notification and interview reduced during the 4 years of the study. Autopsies were conducted on all cases, the median time to autopsy being 3 days. At the conclusion of the investigation, a local multi-agency case discussion was held in 88% of cases. The median time for the whole process (including family support) was 5 months. Conclusions: This study has demonstrated that with appropriate protocols and support, the joint agency approach to the investigation of unexpected infant deaths can be successfully implemented

Hazardous cosleeping environments and risk factors amenable to change: case-control study of SIDS in south west England

Objectives: To investigate the factors associated with sudden infant death syndrome (SIDS) from birth to age 2 years, whether recent advice has been followed, whether any new risk factors have emerged, and the specific circumstances in which SIDS occurs while cosleeping (infant sharing the same bed or sofa with an adult or child). Design: Four year population based case-control study. Parents were interviewed shortly after the death or after the reference sleep (within 24 hours) of the two control groups. Setting: South west region of England (population 4.9 million, 184 800 births). Participants: 80 SIDS infants and two control groups weighted for age and time of reference sleep: 87 randomly selected controls and 82 controls at high risk of SIDS (young, socially deprived, multiparous mothers who smoked). Results: The median age at death (66 days) was more than three weeks less than in a study in the same region a decade earlier. Of the SIDS infants, 54% died while cosleeping compared with 20% among both control groups. Much of this excess may be explained by a significant multivariable interaction between cosleeping and recent parental use of alcohol or drugs (31% v 3% random controls) and the increased proportion of SIDS infants who had coslept on a sofa (17% v 1%). One fifth of SIDS infants used a pillow for the last sleep (21% v 3%) and one quarter were swaddled (24% v 6%). More mothers of SIDS infants than random control infants smoked during pregnancy (60% v 14%), whereas one quarter of the SIDS infants were preterm (26% v 5%) or were in fair or poor health for the last sleep (28% v 6%). All of these differences were significant in the multivariable analysis regardless of which control group was used for comparison. The significance of covering the infant’s head, postnatal exposure to tobacco smoke, dummy use, and sleeping in the side position has diminished although a significant proportion of SIDS infants were still found prone (29% v 10%). Conclusions: Many of the SIDS infants had coslept in a hazardous environment. The major influences on risk, regardless of markers for socioeconomic deprivation, are amenable to change and specific advice needs to be given, particularly on use of alcohol or drugs before cosleeping and cosleeping on a sofa

The Confidential Inquiry into premature deaths of people with intellectual disabilities in the UK: a population-based study

SummaryBackgroundThe Confidential Inquiry into premature deaths of people with intellectual disabilities in England was commissioned to provide evidence about contributory factors to avoidable and premature deaths in this population.MethodsThe population-based Confidential Inquiry reviewed the deaths of people with intellectual disabilities aged 4 years and older who had been registered with a general practitioner in one of five Primary Care Trust areas of southwest England, who died between June 1, 2010, and May 31, 2012. A network of health, social-care, and voluntary-sector services; community contacts; and statutory agencies notified the Confidential Inquiry of all deaths of people with intellectual disabilities and provided core data. The Office for National Statistics provided data about the coding of individual cause of death certificates. Deaths were described as avoidable (preventable or amenable), according to Office for National Statistics definitions. Contributory factors to deaths were identified and quantified by the case investigator, verified by a local review panel meeting, and agreed by the Confidential Inquiry overview panel. Contributory factors were grouped into four domains: intrinsic to the individual, within the family and environment, care provision, and service provision. The deaths of a comparator group of people without intellectual disabilities but much the same in age, sex, and cause of death and registered at the same general practices as those with intellectual disabilities were also investigated.FindingsThe Confidential Inquiry reviewed the deaths of 247 people with intellectual disabilities. Nearly a quarter (22%, 54) of people with intellectual disabilities were younger than 50 years when they died, and the median age at death was 64 years (IQR 52–75). The median age at death of male individuals with intellectual disabilities was 65 years (IQR 54–76), 13 years younger than the median age at death of male individuals in the general population of England and Wales (78 years). The median age at death of female individuals with intellectual disabilities was 63 years (IQR 54–75), 20 years younger than the median age at death for female individuals in the general population (83 years). Avoidable deaths from causes amenable to change by good quality health care were more common in people with intellectual disabilities (37%, 90 of 244) than in the general population of England and Wales (13%). Contributory factors to premature deaths in a subset of people with intellectual disabilities compared with a comparator group of people without intellectual disabilities included problems in advanced care planning (p=0·0003), adherence to the Mental Capacity Act (p=0·0008), living in inappropriate accommodation (p<0·0001), adjusting care as needs changed (p=0·009), and carers not feeling listened to (p=0·006).InterpretationThe Confidential Inquiry provides evidence of the substantial contribution of factors relating to the provision of care and health services to the health disparities between people with and without intellectual disabilities. It is imperative to examine care and service provision for this population as potentially contributory factors to their deaths—factors that can largely be ameliorated.FundingDepartment of Health for England

Tracing the distribution concern: Bridging the Gap

Distribution is often presented as an example of a crosscutting concern that is difficult to modularize. This paper presents an approach for modeling distribution using a combination of AOSD and use cases. One of the aims of the paper is to bridge the gap between the handling of crosscutting concerns during the early and later phases of the lifecycle when developing distributed applications. With our approach the distribution concern is modularized in control objects in Analysis, in design control classes in Design and in distributed components in Implementation and Deployment. Use cases are used to establish a clear traceability among the analysis, design, deployment and implementation stages. In this sense, control objects of the analysis have a direct correspondence with distributed components in the implementation and deployment models

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

Is the infant car seat challenge useful?:A pilot study in a simulated moving vehicle

Background and objective The American Academy of Pediatrics recommends that preterm infants complete a predischarge 'car seat challenge' observation for cardiorespiratory compromise while in a car seat. This static challenge does not consider the more upright position in a car or the vibration of the seat when the car is moving. This pilot study was designed to assess the cardiorespiratory effects of vibration, mimicking the effect of being in a moving car, on preterm and term infants. Methods A simulator was designed to reproduce vertical vibration similar to that in a rear-facing car seat at 30 mph. 19 healthy newborn term and 21 preterm infants, ready for hospital discharge, underwent cardiorespiratory measurements while lying flat in a cot (baseline), static in the seat (30°), simulator (40°) and during motion (vibration 40°). Results Median test age was 13 days (range 1-65 days) and median weight was 2.5 kg (IQR: 2.1-3.1 kg). Compared with baseline observations, only the total number of desaturations was significantly increased when infants were placed at 30° (p=0.03). At 40°, or with vibration, respiratory and heart rates increased and oxygen saturation decreased significantly. Profound desaturations &lt;85% significantly increased during motion, regardless of gestational age. Conclusions This is the first study to assess the effect of motion on infants seated in a car safety seat. Term and preterm infants showed significant signs of potentially adverse cardiorespiratory effects in the upright position at 40°, particularly with simulated motion, not identified in the standard challenge. A larger study is required to investigate the significance of these results.</p

An Integrated Analysis of Maternal-Infant Sleep, Breastfeeding, and Sudden Infant Death Syndrome Research Supporting a Balanced Discourse

Breastfeeding and the place of sleep for the mother and the infant have been controversial internationally due to reported concerns regarding infant deaths despite the known benefits of exclusive and prolonged breastfeeding, which are increased by breastfeeding at night. The aims of this integrated analysis were to (a) review breastfeeding and maternal and infant sleep research literature via historical, epidemiological, anthropological, and methodological lenses; (b) use this information to determine where we are currently in safeguarding both infant lives and breastfeeding; and (c) postulate the direction that research might take from this point forward to improve our knowledge and inform our policy and practice. Despite well-meaning but unsuccessful campaigns in some countries to dissuade parents from sleeping with their babies, many breastfeeding mothers and caregivers do sleep with their infants whether intentionally or unintentionally. Taking cultural contexts and socio-ecological circumstances into consideration, data supports policies to counsel parents and caregivers on safe sleep practices, including bed-sharing in non-hazardous circumstances, particularly in the absence of parental smoking, recent parental alcohol consumption, or sleeping next to an adult on a sofa. Further research with appropriate methodology is needed to drill down on actual rates of infant deaths, paying close attention to the definitions of deaths, the circumstances of the deaths, and confounding factors, in order to ensure we have the best information with which to derive public health policy. Introduction and use of the concept of “breastsleeping” is a plausible way to remove the negative connotations of “co-sleeping” and redirect ongoing data-driven discussions and education of best practices of breastfeeding and sleep