The West Midlands Sudden Unexpected
Death in Infancy Study
Dr Joanna Garstang, Dr Peter Sidebotham, Professor Frances Griffiths
Health Science Research Institute, University of Warwick
Aims
The overall aim of the West Midlands
SUDI project is to improve the well-being
of parents whose infants have died
suddenly and unexpectedly. The
research aim is to formally scrutinise the
new national joint agency investigation
undertaken following a sudden
unexpected death in infancy; assessing
the outcomes of the investigation, the
family’s experience and well-being.
Background
In the 1990s there were prominent
miscarriages of justice when mothers
were wrongly imprisoned for killing their
infants. As a result of this the Kennedy
Report(1) was commissioned which set
the standards required to investigate
unexpected infant deaths. It is now a
legal requirement that all unexpected
infant deaths are investigated jointly, by
police, health and social services
according to these national guidelines .
Parents now receive much fuller
information about the causes of their
child’s death; including any potentially
modifiable risk factors such as bed
sharing or parental smoking.
Prior to the introduction of the joint
agency approach, unexpected death
investigations were very variable and
parents often had little follow-up from
health services and no explanation of
post-mortem results.
The WM SUDI project will study in detail
the parents and professionals experience
of the joint agency approach. This
knowledge should enable the
investigation of unexpected deaths to be
improved resulting in a better experience
for the bereaved parents and increased
understanding of the cause of deaths.
Study Design
The study will include a systematic review
of the literature; a cross sectional survey
of all unexpected infant death cases in
the West Midlands region, and in-depth
case studies of a purposive sample of
cases involving semi-structured
interviews with bereaved parents and the
relevant professionals.
Sample size and Eligibility
The study is based in the West Midlands
NHS Strategic Health Authority Area.
It is planned to recruit 100 the families of
100 unexpected infant deaths during
2010-12.
Bereaved parents will be invited to take
part. Infants must have been aged
between 1 week and 1 year at death and
have been discharged from hospital
following their birth.
Recruitment – a sensitive project with
socially deprived, bereaved parents.
Cases will be identified by the Department
of Perinatal Pathology at Birmingham
Womens Hospital. The research team will
then contact the local consultant
paediatrician to ask them to approach the
family about taking part in the study.
The HM Government document
‘Working Together to Safeguard
Children’ details the procedures
required to be carried out following an
unexpected child death.
Using the clinicians who have been
following up the family since the death
should assist the recruitment in this
sensitive project as most infant deaths
now occur in association with social
deprivation (2). These families are less
likely to take part in medical research but
may be more willing to participate if the
study is explained to them by a doctor
they trust (3).
Structured Interviews with Parents
All recruited families will be visited at
home approximately 6 months following
the death, to complete a structured
questionnaire based interview ,covering
the following issues:
The original investigation
Support received following the death
Parental knowledge of the cause of death
Parental health
Parental employment and time off work.
Parental smoking, alcohol and drug use.
In addition the Hospital Anxiety and
Depression Scale (4) will be completed by
both parents
Case note analysis
The following records will be studied for
relevant information:
Post-mortem report
Infants’ hospital records
Police reports
Coroners’ reports
Social Services records
The data extraction will take place
following the initial interview
In depth Interviews with Parents
Up to 20 families will be interviewed in
greater depth to understand the
experience of the unexpected death
process. These families will be selected
by purposive sampling, guided by data
from the structured interview, to reflect
the variety of experiences.
Interviews will be audio recorded and
transcribed along with field notes.
Data Analysis
The case note analysis and structured
interview data will be analysed using
descriptive and comparative statistics. It
will then be compared with data from
previous studies using a conventional
approach to investigating sudden death.
The parental understanding of the cause
of death as reported at interview will be
compared with the official cause of death
from the post-mortem and final case
discussion.
Comparisons will be made between the
well-being of parents whose infants
received a definite cause for death and
those whose death remains unexplained.
The qualitative data will be analysed
using a Framework approach as
described by Green and Thorogood (5).
The whole research team, including a
broader project user group , will engage
with the analysis process to ensure a
variety of perspectives are brought to the
data.
References
Telephone Interviews with Professionals
Police, paediatricians and social workers
will be interviewed in-depth to get greater
understanding of the strengths and
difficulties of the joint agency
investigation. The professionals selected
for these interviews will be those relevant
to the cases whose parents were selected
for in-depth interview. This will enable
triangulation of data.
An additional group of professionals will
also be selected for in-depth interviews.
These professionals will have dealt with
complex cases, such as those with
significant child protection issues where
the families were not recruited into the
study.
1.
2.
3.
4.
5.
Royal College of Pathologists, Royal College of
Paediatrics and Child Health. Sudden unexpected
death in infancy: A multi-agency protocol for care
and investigation. Royal College of Pathologists,
Royal College of Paediatrics and Child Health.;
2004.
Blair PS, Sidebotham P, Berry PJ, Evans M,
Fleming PJ. Major epidemiological changes in
sudden infant death syndrome: a 20-year
population-based study in the UK. Lancet 2006;
Jan 28;367(9507):314-9.
Hynson JL, Aroni R, Bauld C, Sawyer SM.
Research with bereaved parents: a question of
how not why. Palliat Med 2006; Dec;20(8):80511.
Zigmond AS, Snaith RP. The Hospital Anxiety
and Depression Scale. Acta Psychiatr Scand
1983; Jun;67(6):361-70.
Green J, Thorogood N. Qualitative methods for
health care research. London; Thousand Oaks,
California: SAGE Publications; 2004.
Dr Joanna Garstang, the Lead Investigator , is a
NIHR Doctoral Research Fellow and
Community Paediatrician