THE WEST MIDLANDS SUDDEN UNEXPECTED DEATH IN INFANCY PROJECTDr Joanna Garstang, Dr Peter Sidebotham, Dr Frances Griffiths.

Health Science Research Institute, University of Warwick

Poster number 28

RESEARCH QUESTIONS

PROPOSED METHODOLOGY

ANTICIPATED BENEFITS OF THE STUDY

AIMS

ANTICIPATED DIFFICULTIES WITH THE STUDY

BACKGROUND

BACKGROUND (contd.)INTRODUCTION

The West Midlands SUDI project aims to evaluate the new nationalapproach to investigating sudden infant deaths, where police, healthand social services work jointly following a set protocol. It will studyhow effective the new approach is at determining causes of death andcontributory factors as well as offering support to parents andimproving their well-being. It will also study in detail the parents’experiences to determine which aspects of the new approach are mostbeneficial. The new approach, although now enshrined in law inEngland, has yet to be evaluated

The Kennedy report 1on sudden unexpected death in infancy (SUDI)aimed to prevent miscarriages of justice and protect the welfare andsafety of infants and children. It gives a detailed protocol, the jointagency approach, to be followed by police, health and social services,working jointly following a SUDI.

The joint agency investigation, as described by the Kennedy Reportconsists of the following elements:A complete post mortem examination performed by a paediatrictrained pathologist according to a standard protocol.A full medical history taken by an experienced paediatrician.Analysis of the death scene by police and paediatrician.Involvement of social services, with early joint agency case planning.A case review, some weeks later, when all information is available, toreach a final classification of the death.

All relevant information is shared with the families, including anypotentially modifiable risk factors present, which may have beenrelated to the death.

Previous approaches to investigating SUDI were very variable, butparents often had little follow-up from health services and noexplanation of post-mortem results.

Parents suffer more anxiety and depression following Sudden InfantDeath Syndrome (SIDS) than parents of stillborn infants, or thosedying on neonatal units 2. The poorer outcome for SIDS parents mayrelate to the lack of explanation for the death, and in the absence ofone parents then blaming themselves 3.

There is some evidence that a thorough investigation increases thelikelihood of a SUDI case having a complete cause of deathdetermined 4 compared to previous approaches5. A number ofpotentially modifiable risk factors for SIDS have been established,these include parental smoking 6, co-sleeping (bed sharing) especiallyon sofas 7 , over-heating 8and prone sleep position 9.

Is the joint agency approach supportive and appreciated by bereavedparents?

Which elements of the joint agency approach (if any) are of particularbenefit in helping to identify the cause and circumstances of death andin supporting bereaved parents?

What are the experiences of bereaved parents whose baby’s deathhas been investigated according to the new joint agency approach?

How does the joint agency approach affect parental recovery andchanges in childcare practice?

Families of infants; dying suddenly and unexpectedly will beapproached for recruitment following the final case discussion,approximately 4 months after the death. The initial approach to familieswill be made, in person, by the Paediatrician who has been followingup the family since the death.

All families will be asked to complete a structured interview about theinvestigation following the death, parental knowledge of cause of deathand parental health. Families will be re-interviewed at least 2 yearsafter the death, for details of parental mental health, recovery andpossible changes in child-care practice.

Hospital records, Coroner’s transcripts, police and social servicerecords will be analysed.

A sample of families will be selected for in-depth interviews, severalmonths after the death, for more detail about their experiences.

The study will take place in the West Midlands from 2010-2012. Caseswill be identified through Birmingham Women’s Hospital, as all infantpost-mortems for the region take place there.

At present there are around 80 SUDI cases a year in the WestMidlands, it is hoped to recruit 50% of these giving an estimatedsample size of 120 during the study period.

The study should result in considerable knowledge about the parentalexperience of the new joint agency investigation of SUDI; and thisknowledge could be used to tailor the approach for maximum benefit toparents.

The study offers the potential for long-term follow-up of SUDI cases,possibly even developing a SUDI cohort of parents, giving a very richdata set. This could be used in the future for other SUDI researchprojects.

SUDI deaths are now rare events, which occur disproportionately in

socially deprived families 7 who may be less likely to take part in

medical research 10 11. This will make recruiting and retaining families

challenging, as highlighted in our recent pilot study.

The very nature of these deaths means that this study will involve

sensitive topics. Care will be taken in approaching families and in

supporting them through the process of the research. An advisory

group will be established and input sought from bereaved parents and

from parental support groups, to ensure the research is carried out in a

sensitive and appropriate manner.

PROPOSED METHODOLOGY

REFERENCES

The project will use both quantitative and qualitative methods.

It will involve structured interviews, case-note analysis and in-depthinterviews.

1. Royal College of Pathologists, Royal College of Paediatrics and Child Health. Suddenunexpected death in infancy: A multi-agency protocol for care and investigation. RoyalCollege of Pathologists, Royal College of Paediatrics and Child Health.; 2004.2. Vance JC, Najman JM, Thearle MJ, Embelton G, Foster WJ, Boyle FM. Psychologicalchanges in parents eight months after the loss of an infant from stillbirth, neonatal death,or sudden infant death syndrome--a longitudinal study. Pediatrics 1995; Nov;96(5 Pt1):933-8.3. Limerick S. Family and health-professional interactions. Ann N Y Acad Sci1988;533:145-54.4. Blair PS, Sidebotham P, Edmond M, Evason-Coombe C, Heckstall-Smith E, FlemingP. How do environmental conditions and circumstances contribute to suddenunexpected infant death (SUDI)? A comparison of normal infant sleeping conditions and'death scene' investigations after SUDI. Unpublished data 2007;.5. Fleming P, Blair PS, Bacon CJ, Berry P. Sudden Unexpected Deaths in Infancy: TheCESDI SUDI Studies 1993-1996. London: The Stationery Office; 2000.6. Fleming P, Blair PS. Sudden Infant Death Syndrome and parental smoking. EarlyHum Dev 2007; Nov;83(11):721-5.7. Blair PS, Sidebotham P, Berry PJ, Evans M, Fleming PJ. Major epidemiologicalchanges in sudden infant death syndrome: a 20-year population-based study in the UK.Lancet 2006; Jan 28;367(9507):314-9.8. Gilbert R, Rudd P, Berry PJ, Fleming PJ, Hall E, White DG, et al. Combined effect ofinfection and heavy wrapping on the risk of sudden unexpected infant death. Arch DisChild 1992; Feb;67(2):171-7.9. Fleming PJ, Gilbert R, Azaz Y, Berry PJ, Rudd PT, Stewart A, et al. Interactionbetween bedding and sleeping position in the sudden infant death syndrome: apopulation based case-control study. BMJ 1990; Jul 14;301(6743):85-9.10. Baquet CR, Commiskey P, Daniel Mullins C, Mishra SI. Recruitment andparticipation in clinical trials: socio-demographic, rural/urban, and health care accesspredictors. Cancer Detection & Prevention 2006;30(1):24-33.11. Lundberg I, Damstrom Thakker K, Hallstrom T, Forsell Y. Determinants of non-participation, and the effects of non-participation on potential cause-effect relationships,in the PART study on mental disorders. Social Psychiatry & Psychiatric Epidemiology2005; Jun;40(6):475-83.

The overall aim of the West Midlands SUDI project is to improve thewell-being of parents whose infants have died suddenly andunexpectedly.

The research aim of the West Midlands SUDI project is to explore theimpact of the joint agency investigation, undertaken following a suddenunexpected death in infancy and the outcome of the investigation,family’s experience, recovery and possible changes in childcarepractice.

CONTACT

Joanna Garstang - J. Garstang@warwick.ac.uk for further details